Monday, 24 December 2007

Happy Christmas!

Clare and I wish all the readers of our blog a very Happy Christmas! We pray that amidst all the turkey, presents and mayhem you will be able to spend some time thinking about the real "reason for the season".

We would also like to thank everyone for their love, prayers, supportive messages and practical help over the last few months. You have all helped us more than you could ever know and we are extremely grateful... We couldn't have got through it without you!

We hope you enjoy your Christmas!

Andy and Clare

Sunday, 16 December 2007

Post Mortem Results

On Friday, we went to Addenbrookes to see the consultant who did all Theo's pre-natal scans. By chance, the final post mortem results had been released that morning and so he went through the summary with us. There are no genetics results as yet and we are hoping to go through the post mortem results more thoroughly with the paediatrician in Ipswich who helped treat Theo. Nevertheless, some of the picture is starting to come together.

The results concluded that Theo had either Spondyloepiphyseal Dysplasia Congenita (SEDC) or Kniest Dysplasia. These two are very similar in characteristics and are both mutations of the same section of gene (that's as about as much technical detail as I can give when it comes to genetics!). Although not necessarily lethal, possible problems of these conditions include a small trachea and this was clearly the case with Theo.

Both the conditions are autosomal dominant which means that Clare and I could not carry the gene without having the condition itself. We clearly are not effected so this is good news because it means that it is not something in our genes that we passed on and (hopefully!) this reduces the odds of recurrence.

A random mutation at conception is still one possibility but another, which we were not previously aware of, is Gonadal Mosaicism. This condition could be present in either of us and is where a percentage of our gametes (sex cells) carry a mutation which could cause Theo's condition.

We are now waiting to see the genetic counsellor who will hopefully be able to shed some light on which of the two possibilities is most likely and advise us on what to do next.

We also are still awaiting Theo's genetics tests which will show whether or not he carries the offending gene. If he does, the doctors will be able to offer us genetics tests early on in any future pregnancy to determine whether or not the situation has arisen again. Even without the genetic test, our Addenbrookes consultant seems to think that growth scans at 12, 16 and 20 weeks will be able to diagnose the condition by measuring the long bones.

So this is definitely a positive step forward and it is nice to see things moving along at last. However, it looks like it may be 6 weeks until we can see the genetic counsellor and then a further wait whilst they come to a conclusion. As you can imagine, this is a little frustrating as we would like to try again to start a family as soon as possible so please pray for patience! Nevertheless, we trust in God's timing. We know that it has proved correct in the past and hope that it will do the same in the future.

Thank you to everyone who has continually thought of, prayed for and helped us. We really appreciate all that you do!

Sunday, 9 December 2007

Did you hear it too?

Did you hear it too?

They say that angels don’t appear nowadays.

Yet that’s what it was like, a mighty choir, joyful, glorious.

A strange song, ebbing and flowing like the eternal sea,

Far away beyond the stars.

Did you hear it too?

Perhaps I just imagined it. Wishful thinking. Was it all in my mind?

And yet the feeling was real. The love was real, overwhelming,

Beyond all human sense or logic, bright as the sun,

Dazzling my eyes.

Did you hear it too?

Did you hear it as your soul flew to the arms of your Saviour?

Did you know that you would leave us grieving?

Did you know how hard it would be?

Did you know that we would never forget?

Did you hear it too?

That majestic choir would have engulfed all other sounds.

All you would have heard was the music of the love of God.

One day we shall hear it too.

One day we shall all sing together.

by Hugh Dungey

Monday, 3 December 2007

We're all going on a....winter holiday!

Clare and I are off to Centre Parcs for 5 days today. It should be a very relaxing break and is well needed!

In case you missed it, Candi left a message on my last post to let us know that she knows exactly what we're going through. Her blog tells an uncannily similar story to ours! Her daughter, Avery, was diagnosed with a lethal form of Skeletal Displaysia (possibly Thanatophoric) and tragically was called home just before she was born on 13th October.

Please take time to read Candi's story and pray for both her and her husband as they come to terms with their loss.

Hopefully, we will return well-rested and prepared for the run up to Christmas!

Sunday, 25 November 2007

The final farewell

Today we went to Southwold to scatter Theo's ashes. Southwold is a special place for me and Clare. We do a beach mission there every year; I proposed to Clare there and we spend our anniversary there every year.

It was nearly sunset when we arrived and very cold at the end of the pier! We had each written a letter to Theo which we read aloud. I read some Bible verses and Clare said a prayer before we scattered Theo's ashes out to sea. The wind was strong and the ashes flew at great speed across the ocean.

Although the occasion was sad for both of us, we felt a sense of relief that Theo had finally been laid to rest.

God blessed the proceedings by supplying us with this beautiful sunset.

Friday, 16 November 2007

The Waiting Game

The next major milestone in our lives is getting the post-mortem results. These will have a large and potentially challenging effect on how we will proceed with starting a family again. Whilst Clare was at the hospital this week having physio on her knee, she asked to see the paediatrician who treated Theo. He very obligingly took time out to see her but it looks like we might have to wait slightly longer than we envisaged.

Originally, we were told the post-mortem would take 4 - 6 weeks and that time is almost up. The doctor has said that, because of the genetic testing, we may have to wait a further month before we hear anything.

This is a little disheartening, but we trust in God's plan and that his timing is best. As soon as we know anything, we will definitely post here.

On a much more lovely note, Clare decided she would ring Tonya on Knoah's birthday yesterday. Tonya was most surprised to hear from us! We could hear Knoah gurgling happily away in the background while we both chatted to Tonya. She is every bit as lovely and caring in person as she is on her blog and it certainly made our evening.

During the phone call, Tonya commented on how amazing the human spirit is amongst the small group of people we know that share the same kind of experiences. I am so pleased that, despite not having our own little person, the bond with the people we have met is not growing weaker, but deepening.

Monday, 12 November 2007

"So, how are you both doing?"

It's a calendar month and two days since Theo's birth and we've heard that loving and interested question a lot during that time. It is comforting to know that so many people are still thinking about us and praying for us. Once again, thanks to everyone for their support!

So, how are we dong? Not bad... Clare is healing very well from the Cesarean and is already very active. She's filling her time making our lovely house even nicer and buying and selling things on Ebay. This has had dangerous implications for my bank balance and anything that's not nailed down in the house. The sliver lining to all this is that I get the feeling I will get more birthday presents than I could possibly merit!

So, how are we really doing? We have good days and bad days. It's a kind of sadness that's hard to quantify. It doesn't seem to be about anything particularly, such as seeing other babies or thinking about an empty nursery (although such things can trigger it). It just descends like a blanket and, unlike other things that can be fixed, it just stays there until it decides to leave. For Clare, it's worse at night-time. For me it comes less often.

Despite this, We are slowly getting back to normal I think. I'm back at work now and Clare is helping her brother with his valeting business so there are things to fill our days. Generally we remain positive and upbeat and we know that kind of strength must come from God because we certainly couldn't manage it by ourselves.

I'm sorry it's been a while between posts again. Before, this blog had a definite purpose and every other person I talk to seems to have read it. Now, I'm not quite so sure what to write. Although I know that everyone is interested in the results of the post mortem and any subsequent developments, there doesn't seem to be that much to say in between.

So, until I find a new direction for the blog, the posts will probably remain infrequent. If you want to be notified of when new posts appear on the blog to save you keep checking, please send your email address to and I will send you an email whenever anything new comes up. We would also ask you to keep praying for the post mortem and genetic results - that they would be clear and enable us to make decisions for our future.

Thanks once again to everyone out there who has supported us so faithfully! We couldn't have done it without you.

Friday, 2 November 2007

Hot off the press!

Apologies to everyone for not posting sooner. We recently had an interview with our local paper, the Ipswich Evening Star and the result is below.

Baby loss parents thank NHS staff
Evening Star
02 November 2007 | 14:46

AN IPSWICH couple whose newborn son died soon after birth today thanked doctors who battled for five hours to try to save him.

Andy and Clare Dungey are today coming to terms with the loss of baby Theodore, but took time to thank the NHS health professionals for their care.

Theodore, who had dwarfism, died in Mrs Dungey's arms after being born with breathing difficulties. But despite their loss, the couple today said thank you to staff at Ipswich Hospital.

Mrs Dungey, a teacher in Woodbridge, said: “We saw how hard they were working to save him and we know they couldn't have done anymore.

“One of the worst things with grief must be thinking 'if only' but there's no part of us which thinks if only they'd tried that.

“Dr Matthew James the paediatrician told us Theo mattered, and even when it looked like there was no hope he said he wanted to try one last thing. That's what we wanted to hear, to know they did everything possible.”

The dwarfism was diagnosed early in the pregnancy, but although they knew respiratory problems were a risk, there was no way of knowing how serious they were.

Mr Dungey, a BT worker, said: “Theodore would have had a poor quality of life so if getting the tube in had been successful, I don't know if it would've been best.

“We didn't want to bring a child into the world if they were going to suffer.”

Mrs Dungey was induced on October 10 and had a caesarean section. Theodore appeared well until he was lifted out and stopped breathing.

He was able to breathe for a short while at a time, but doctors could not put a ventilation tube in to sustain his breathing because of the unusual anatomy of his throat.

Mrs Dungey said: “He wasn't with us for very long but we feel his life was for a reason.

“We are Christians and know he was meant to be in our lives. He gave us an amazing experience and opened our eyes to dwarfism.

“We think about what he brought us rather than just the loss.”

Mr and Mrs Dungey, of Ditchingham Grove, also thanked other hospital staff who helped them, including those from the midwifery, physiotherapy and registration suite departments, and the funeral directors.

The couple, both 28, were allowed to watch on as the doctors treated Theodore, and when doctors stopped treatment, held him for around five minutes before he died.

They have written a blog about their experience at

A funeral service was held at Colchester Road Baptist Church and Theodore was cremated. Mr and Mrs Dungey are hoping to scatter his ashes at Southwold, where they got engaged.

N Do you want to thank hospital staff? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail

We wrote a letter to them initially because we wanted to let them know about how excellent the hospital had been. They were interested in our story and decided to write an article about it. The article even mentions this blog and hopefully this will bring some of the issues and adventures we've faced to a new audience.

Wednesday, 24 October 2007

Pictures of Theodore

I thought it was about time I put up some pictures of our little boy so here they are. Just to be warned that some of them are him after he died but he looks very peaceful. The white cardigan Theo is wearing was knitted by his Grandma (Clare's mum).

Clare would like it noted that she didn't exactly look her best when these pictures were taken!

We're obviously biased but we think he's beautiful!

Sorry it's been a while between posts. Both Clare and I have come down with some kind of flu, probably as the result of a hectic week!

The funeral last Friday was lovely and Neal, our pastor, spoke some excellent and comforting words. The service wasn't as hard as Clare and I expected and we are convinced that is because so many people were praying for us at the time. We have now got Theo's ashes back and will scatter them in Southwold (our special place) very soon.

We now await the post mortem and would ask for your prayers for clear results so that Clare and I can consider our prospects for the future. We will let you know when we get the results - the Dungey Baby Saga continues!

Thursday, 18 October 2007


Yesterday, I was pleading for sympathy and now I’m back asking for money! Well, not exactly, but a number of people have asked about ways they can give in remembrance of Theo. Clare and I are pleasantly surprised that people who have already given so much, should want to do more. However, please don’t feel you have to give anything else.

If you do want to give, we have decided that monetary contributions will be split between our Church growth fund and the RGA. Our church is expanding fast and the building is not big enough to keep up. We know that Theo would have been a well-loved member of the church and it seems fitting to contribute towards its development. The Restricted Growth Association provided us with support and well-written literature when we first inquired about Theo’s condition. We know they would have been a tremendous support to us and we would like to give back to them.

Donations can be sent to (envelopes marked "In memory of Theodore Dungey"):

Colchester Road Baptist Church,

Colchester Road,





Wednesday, 17 October 2007

People's amazing thoughtfulness

As I start to write this, I'm thinking to myself that I have to be very careful how I phrase what I want to say. The last thing I want is for people to think that I'm fishing for sympathy or attention. The purpose of this post is to thank people and not to hint for more from people who have already given so much.

With that caveat, I have to say that Clare and I are truly amazed at how thoughtful people are. I have to confess that I'm pretty bad when it comes to helping people who are going through a hard time. I might think about them occasionally and pray for them in church. Clare is much more thoughtful and very good at writing cards but such things never really enter my head.

But the amount of love and support we have received is beyond belief! There are people who text us regularly, never expecting a reply, just to let us know they are thinking of us. There are people who aren't content to send one email of condolences and then be done, but to write frequently just to to say they are praying for us. A school friend of mine wrote to me yesterday to say that when he runs the Bath half-marathon next year, he's going to raise money for the Restricted Growth Association in memory of Theo.

(Just to re-iterate... don't feel bad if you feel you don't fall into any of the above categories. Just by reading this blog and involving yourself in our lives is a tremendous support!)

So, thank you to everyone who has made this last week that little bit easier. A number of people have commented on how strong and positive we are being. Just to clear that up, for the record; If we seem strong, it does not come from ourselves but from God who gives us strength. If we seem positive, it is because we are surrounded by caring people who uphold us in thought, prayer and action.

So thanks again. We would be in a worse state without you!

Monday, 15 October 2007

Baby Loss Awareness Day

Today is Baby Loss Awareness Day in the UK. To mark this, there was a service at the chapel in Ipswich hospital yesterday and Clare and I decided to would be good to attend. We lit a candle for Theo and they gave us each a white rose. Although sad, it was comforting to share the service with people who could relate to what we are going through. It was nice to see that a couple of the midwives who we had met on the ward were there as well.

We were also given a balloon which we are going to release today. I think 7 - 8pm today is the actual time for rememberance so Clare and I plan to light a candle and say some prayers for Theo then.

Saturday, 13 October 2007

We're back home

Clare was discharged from the hospital yesterday and we're back home. Now that I have a few minutes breathing time, I thought I'd post some more details about the last few days. I know many people who read this blog have been greatly saddened by what has happened. My main motivation for this post is not to make you all more sad by explaining the details, but to let you know some of the positive aspects. Although the outcome for all of us has been devastating, it was the best for Theodore.

Clare's waters were broken on Tuesday night and she was put immediately onto a drip to start her contractions. At about 10pm, these were getting strong so she opted for a epidural to ease the pain. By about 3am, she was not progressing as fast as the doctors hoped, so they decided that she should have a C-section.

Once they got Theodore out, it was clear that they were having difficulties with his breathing. They tried to get a ventilating tube into him for the entire time Clare was being sewn up. Eventually, Theodore went up to the Special Care Baby Unit and Clare went into recovery. From there we went back to the ward to await news.

Eventually, the chief-paediatrician came to see us and explained that, although Theodore could breathe by himself, he didn't think he would be able to keep it up for long and they were still unable to ventilate him. After more waiting, we were allowed up to the unit to see him as the doctors continued to work on him. They told us again that they were not hopeful that they would succeed. It was clear to both of us how very poorly Theo was and, although partly we wanted them to get the tube in, a bigger part of us already realised that if they did, he would have a very poor quality of life and that we did not want him to suffer unnecessarily.

Eventually, we told them that it would be fine if they stopped. Theo spent his last few minutes with us, free from the drips and machines, in a quiet room. There we cuddled him, prayed for him and took some pictures so we could remember him. He died peacefully in his mummy's arms.

From there, the hospital allowed us to spend the rest of the day with him. Our families all came to see him and hold him. Once alone, Clare and I cleaned him and dressed him in his own clothes. He looked beautiful. At the end of the day, we said our goodbyes and they took him to the Chapel of Rest.

Although this has been a difficult time, we feel that Theodore was given every available opportunity. The doctors worked for 5 hours to try to save him and we felt they did everything in their power. Although the C-section was traumatic, if he'd been delivered naturally, he probably wouldn't have made it out. We were lucky that there was nothing else going on that night which meant we had every available person there, including an extra, experienced anaesthetist and paediatrician. We couldn't have asked for a higher level of care. Despite our sadness, this has given us peace about the situation.

The main doctor involved said that Theodore's anatomy was very unusual; He had a large tongue and awkward airways that made it impossible to get a tube in successfully. They think that, from the size of his stomach, he could have had digestive issues too. All these details were impossible to determine from the earlier scans. They have taken samples to try and understand exactly what condition he had as this will help us to know what we do about future children. Unfortunately, they feel that this information may not be enough so he has to go for a post-mortem as well. Despite being sad about this, we take comfort from knowing that this investigation may help our future children and research for other families in this situation. As long as this doesn't take too long, the funeral will be on Friday.

We have been tremendously well supported by our family and friends and have received more support than we could imagine. Thank you to everyone who has been thinking and praying for us. We feel very loved and have taken great comfort from people sharing their own situations with us. Please don't underestimate what your support means to us and we're so proud that Theo has touched so many hearts.

We don't know why God has chosen this path for us. We have learnt so much about dwarfism and made so many friends along the way, we feel sure He has a plan for us long term. As He helps to build back our life again, I am sure he will reveal this plan to us.

So our hearts are heavy with grief, but we know that for Theodore there is no more suffering because he is in heaven. We don't know exactly what that is like but the Bible verse at the end of this post promises that there is no pain or tears. We have no doubt that our little Theo is with God.

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, "Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."

Revelation 21:1-5

“For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

Wednesday, 10 October 2007

Sad News

Theodore Edward Dungey was born by emergency Cesarean at 3:56am today weighing 6lbs 10oz. Unfortunately, I'm very sorry to say that he had significant respiratory problems and despite the Special Care Baby Unit's best attempts to resuscitate him, he died at about 9:30am. Both Clare and I were there to cuddle him during his last few minutes.

Despite the tragedy of this, Clare and I have spent a very special day with Theodore. Even though he was no longer with us, we found this time comforting and were joined by our close family so they could say their goodbyes.

We feel proud to have known Theodore as our son, even though it was only for a few hours. His life has brought us new friends from across the globe, broadened our horizons and made us into stronger people. He has changed our life forever and we love him very dearly.

Although this is a sad situation, as Christians we know that he has gone to be with his Lord in heaven and look forward to the day when we will meet him there.

I am very sorry to have to break the news to so many friends in this way and I pray that you would find peace in your sadness.

We will be back to give more information in a few days.

All our love
Clare and Andy

Naked I came from my mother's womb, and naked I shall depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised.
Job 1:21

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever.
1 Thessalonians 4:13-17

Tuesday, 9 October 2007

Ok, this is getting a bit silly!

I'm starting to think there isn't actually a baby in there!

The (painful!) examination this morning showed that there was still no progress. Clare is on pessary 3 and it looks like this a repeat of last week's show rather than the next episode. The doctor's are talking about a C-section tomorrow which is really not what we'd planned but we seem to be fast running out of options.

Please pray that something will happen today so that we don't have to have a C-section and also for Clare - she is trying her best to stay on top of things but it's been a long run of disappointments and she's getting to the end of her tether.

If the tension is getting unbearable, tune in next week and maybe we'll have some actual news...otherwise, watch this space!

Monday, 8 October 2007

The latest...

which is not a lot : ( sorry everyone!

Clare's been in since this morning and she's on pessary number 1. So far, there's not been any progress unfortunately. She is slightly dilated but it looks like breaking her waters is still going to be tricky. I'm off to hospital in a bit, having been at work all day, and they're going to take another look to see if anything's doing then. Clare's mum has been doing the relief shift in my absence so I can try and keep hold of some paternity leave.

Please pray for Clare that things will get started soon as it's quite discouraging at the minute. We would really like to avoid a repeat of last week.

As ever, I'll be back later for more news (if there is any!), but please, don't hold your breath as I don't think it will happen today.

Once again, thanks for all your support!

Sunday, 7 October 2007

Induction II: This time the baby's coming out!

So we're off first thing tomorrow for the second installment of the Induction series. We're hoping it's not going to be a trilogy! The bag has been re-packed and the house re-cleaned. We've re-prayed prayers for health and safety and re-stocked food for Andy. I think we're good to go!

Hopefully things will be more favourable this time. Clare is 40 weeks on Wednesday so he should be nearly brewed by now! Please pray for Clare and Little D that the whole experience will go well and that he will be brought to us safely.

There's a lot of people out there that found the waiting hard last week so we're sorry you've got to go through it all again. We'll try to keep people informed whenever we can, but please be patient if you don't hear for a while. We may not be able to get back to the blog immediately but we'll do what we can.

See you next time with a baby!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Ephesians 3 v 20-21

Wednesday, 3 October 2007

We're home again...but no baby!

We waited so long trying to keep him he doesn't want to come out!

In summary, the doctors checked Clare again this morning and found they still couldn't break her waters. We had two options; go home or have a C-Section so we chose option 1. There is no tearing hurry to get him out and he is perfectly happy. We've had a scan and that has come back totally normal with regards to all the important things.

Our consultant at Addenbrookes agrees that there's no point forcing him out and that the main reason for having an induction was to ensure all the necessary people were available if needed. With that in mind, we're booked in again on Monday for "Induction II: This time the baby's coming out!".

We're in surprisingly good spirits, considering Clare has spent 2 days inside and I've spent my life savings on magazines and chocolate! I think the relief of not having a C-section is greater than the disappointment of coming home without a baby. Although that course of action would have put an end to the waiting, the prospect of a 6-week recovery, and potentially subsequent babies having to be born by C-Section as well, makes this seem like the better option.

So everyone can start to breathe again. Sorry for putting you all through it. Thanks for all your prayer and support! Hopefully next week will be more productive.

I leave you with this passage from James. As with lots of parts of the Bible, this is easy to say, but not so easy to put into practice! Nevertheless, we believe that all God's word is true and this is no exception!

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. "
James 1 v 2-4

Tuesday, 2 October 2007

Still nothing!

This is day 2 of the birthing saga! Clare had a third pessary at about lunch time today (I think... the hours kind of run into each other!) and there's still no result as yet. They wanted to break her waters but conditions weren't favourable so they have put this off.

I've left Clare at the hospital again tonight and the doctors will re-assess things tomorrow. Hopefully, tomorrow will be D-day (literally!) but we'll wait and see.

Please pray for Clare as she is in some discomfort and the whole waiting-game is hard work! Thanks for everyone's continued support!

Monday, 1 October 2007

The latest!

I know many people are keen to hear the latest news. There's nothing really to report so far... Sorry! We went in this morning and Clare had the first pessary at about 3pm. She's started to feel some discomfort but nothing had really changed by 9pm so I left her having just had her second pessary.

She's staying in overnight and I'll go back in tomorrow to see how things have progressed. It's a slow process!

Thanks for everyone's support. I'll keep you posted when I can!

Sunday, 30 September 2007

So this is it!

Tomorrow, Clare goes into hospital to be induced. We tried most things to get LD out naturally but he 's still in! So, we're looking forward to tomorrow with a mixture of excitement and apprehension. The bag is packed and everything is pretty much sorted so we're feeling really happy that we've finally made it.

Looking back, it's been a long 10 weeks since Clare's fluid level went up and the doctors said that our boy could arrive any day. There's been a lot of hospital visits and plenty of ups and downs during that time. We feel very blessed to have a great family on both sides who have supported us all the way. We also have a huge amount of friends who have shared the journey with us; from church, work, Southwold Beach Mission, and our NCT class, to name but a few.

We have made lots of new friends through this whole experience and many who have found themselves in a similar situation to us. We like to particularly mention Knoah and his mum, whose blog has been an excellent source of information and a comfort to us; and also Kara's mum, Jan, who made everything seem do-able.

Most of all, we have to give the honour to God. Without our faith in him, we firmly believe this would have been much harder to deal with. When you become a Christian, God doesn't promise you an easy life but He does say that He'll be there with you all the way and He'll help you to get through it. This has certainly been our experience.

So a new chapter of our life is about to start and next time I post I will have some lovely pictures of our new son to share with you! Thank you to all those who have faithfully read the blog so far. Stick with us for the next exciting installment.

As is appropriate, the last word goes to God! This is a very well-known part of the Bible, but one that we find to be true and that gives us great hope for the future, whatever that may hold.

Psalm 23

1 The LORD is my shepherd, I shall not be in want.

2 He makes me lie down in green pastures,
he leads me beside quiet waters,

3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.

4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD

Tuesday, 18 September 2007

The date is set!

Yesterday, we went to Ipswich hospital and set the 1st October as the date for Clare's induction! We could have had a slightly earlier date, but we wanted to avoid potentially running into the weekend as there are fewer staff around then. The 1st is a Monday so we've got the whole week to get him out, although hopefully he won't take that long.

So we are feeling very happy at the moment. We finally have an end date which is something to aim for. Ideally, we would like him to appear a bit before that because being induced isn't a barrel of laughs (says he, speaking from experience!). But if all else fails, we have that date set in our minds. It's a good job it's still just under two weeks away because we're still not entirely sorted!

Apologies for the lateness of this posting. The number of enquiries we've had from people shows how much they are thinking about us. We really appreciate your thoughts and prayers!

Of course, the downside (not really!) to this is that in two weeks we start the process of being parents and then the fun really begins!

Sunday, 16 September 2007

If you're interested...

For those wanting to keep themselves informed, a couple of interesting things:

Tonya has recently been contacted by a lady in South Africa whose daughter, Leah, has Achondroplasia. She's posted a You Tube video here about it.

Channel 4 has started a series called "Born to be different" and it concludes on Thurday at 9pm. The first episode was last week and it follows the lives of 6 children who have had various medical issues from birth. One of them is a boy called Hamish with Achondroplasia. The programme was very interesting and certainly helped to put what we're dealing with into context, when compared to other congenital problems.

So tomorrow we are going to Ipswich hospital to set an induction date! Exciting times and we'll let you know how it goes.

Friday, 14 September 2007

Baby face!

We started the week with a small, overnight expedition to the hospital. Clare had a pain at the top of her tummy so we went to check it out at about 10pm. It wasn't a bad pain, just different to all the other pains she'd felt so we thought it was better to be safe than sorry. Baby's heart was fine but they seemed to be massively over-cautious and kept her in overnight all the same. When the heart rate was good the next day, they let her go. The plus-side to the trip was that she could check out the ward she will stay on if she's induced.

Yesterday marked a significant milestone on Little D's journey... his last scan at Addenbrookes! We had quite a comprehensive scan and the consultant set an induction date of 38 weeks. We are going to Ipswich on Monday to get a definite date but it looks like it may be somewhere around 26th September. We are both very, very excited!

In other news, his legs have grown, though not much over the last few weeks. All his other measurements are good and, although the head is slightly above average, it is still within the normal range. Clare's fluid was slightly down which was also reassuring.

The best bit was another 3D scan the results of which are here...

So the diet will start just as soon as we get him out! I'm not sure how much of a dwarf he is going to be with a face as chubby as that.

Some people might think that he looks like his dad, but I can't see it myself!

Let's just hope he doesn't inherit my hair!

So the clock is ticking and he'll soon be here which is probably a good job because Clare's body is slowly giving up on her, bit by bit. Please remember her in your prayers because tonight her shoulder, tummy, ribs and knees are all giving her trouble.

[if you have trouble's like heads and shoulder, knees and toes.
Shoulder, tummy, ribs and knees; ribs and knees.
Shoulder, tummy, ribs and knees; ribs and knees!]

So Thursday was an incredible positive day! We feel very blessed and reassured that God is faithful through good times and bad.

Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him;
Lamentations 3 v21-25

Sunday, 9 September 2007

Just one more thing!

With all the busyness of the last week, I forgot one more element of our hectic week! Yesterday we had our first National Childbirth Trust antenatal class. These are not free like the NHS classes but we certainly found our first one very informative. This was the first of two sessions and covered all topics related to labour and giving birth. Even though we'd read about a lot of the things they covered, it helped the information to sink in a bit more and gave us the opportunity to ask questions.

In terms of delivery, it seems like our birth will be similar to any other. As Achondroplasia typically means that the baby has a bigger head, often a Cesarean section is required because the pelvis is simply not big enough to get the baby's head through. Little D's head is a fairly normally size at the moment and so hopefully a C-section won't be needed.

Although, we have been told that Clare can have any of the normal pain-relief, we are wary of pethidine at the minute because it can slow the baby's heart and breathing slightly. This is no major issue with normal delivery but because his lungs may be a bit smaller and also the CCAM issue, we may decide it's not worth the risk.

So this week's baby schedule is almost as busy as last weeks! Clare is going to a NCT breast-feeding class on Tuesday. We have another scan in Cambridge on Thursday and our final NCT class on Saturday. I think we're looking forward to his arrival mostly because it will give us a bit of a rest!

Saturday, 8 September 2007

Blooming big!

In case you're wondering what a high fluid level actually looks like....

The final installment

...for this week at least! We went to see our consultant at Addenbrookes yesterday for our weekly session. Clare's fluid was slightly down on last time and seems to have stabilised in the 30 -35cm region. He didn't take any growth measurements today but has confirmed that, assuming Little Dungey doesn't make an early appearance, Clare will be induced at 38 weeks which will be sometime in the week starting 24th September!

His reasoning for this is that LD will be as developed as he can be by that stage and it would be better to control the environment and circumstances surrounding his delivery.

Our consultant now has two weeks off and this may mean that we don't see him in his official capacity again. This was a slightly sad moment for us because we seem to have developed a good relationship with him and have quite a laugh together. He certainly has given us excellent care and we will definitely take the little one back to see him.

We still have weekly scans scheduled but these will be with a different consultant. Clare has seen him once already and he is very good also, so we are not worried about that.

So that date is (nearly) set. Clare and I are getting very excited at the thought of finally meeting our boy. It's been a long time coming but we can see the end in sight. There's just the small matter of labour to get through now!

Tuesday, 4 September 2007

We're off to see the wizard!

...well, close... the paediatrician, anyway! He's the one that Jan recommended and was very pleasant, just as she said. He has told us that a paediatric consultant will check over Little D when he emerges and that they will assess what the best course of action is after that.

It seems unlikely that they will test genetically for Achondroplasia straight away. Instead, they will diagnose from what they observe of him, with a genetic appointment later on. From what he said, it seems that although there is an Achondroplasia gene, it can be caused by a number of genetic issues. So finding the A-gene will prove it definitely is Achondroplasia, but not finding it does not necessarily mean that it isn't.

We were hoping for a slightly faster diagnosis than that, but he is more concerned with dealing with the immediate issues after he's born and rightly so. He seems to think baby may not need any specialist care in the first instance, but will be referred to the appropriate medical consultants as necessary. He has also said that, unless there are any issues, Andy Jr may not need to go into the special care baby unit. They will keep an eye on him initially, but then we will be free to go!

As Clare has extra fluid, they will most likely test that all the pipework to his stomach is working correctly, just in case that is why he's not swallowing the fluid. Extra fluid is common in our circumstances, so this is a precautionary measure and unlikely to be the cause of the problem.

So, all in all, we feel we are in safe hands. We are reassured that we're not at red alert just because our son has Achondroplasia and that they feel there may not necessarily be any complications. If there are, however, we have confidence in their ability to diagnose and treat the problem.

Final Stop (well, this week): Addenbrookes on Friday!

So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6 v31 - 34

Monday, 3 September 2007

The day today

The first of this week's many hospital visits was to the obstetrician. It was quite a short one just to touch base and we're going to see him again in two weeks time. Hopefully by then, we will have a better idea of if they are going to induce Clare and when that will be.

We did get a bonus scan out of the visit though (as if we don't have enough already!). Clare's fluid was a bit lower and Little D's head is still where it should be so that's encouraging.

Next stop: Paediatrician tomorrow!

Sunday, 2 September 2007

What makes you tick?

Today, Little D has been more active than ever before! Normally, Clare will say "Come and feel...he's moving about!" but by the time I've got there, he's stopped his wiggling. However, this evening he's been so active that I've been able feel him for ages as he shifts himself around. He seems to respond to noises on the TV and in particular the music of Meatloaf and the Lord of the Rings film... well, I guess there's no accounting for taste!

There is nothing major to report about our appointment this week. He is still growing in his own little way. The measurements were more tricky to take because his head appears to be engaged and our consultant couldn't get a good enough view of his long bones to get a reading. His head and body are doing well so things are looking good for the big delivery. The consultant seems very happy with his progress.

We had a neonatologist in with us to do the measurement and she filmed the whole proceedings for some case study she was doing. My son's debut on the big screen...I'm so proud! Unfortunately, she didn't let us have a copy but I'm going to keep an eye on You Tube just in case!

Clare's fluid was at its highest and she is pretty uncomfortable. The extra fluid is wearing her down a bit and, even though she wants him to stay in for as long as possible, she would quite like him out so she can have her body back!

We also hit a landmark milestone on the 1st of September. Andy Jr will now be the oldest in his year rather than the youngest (which would have been the case if he'd arrived prior to the 1st). Praise God for his many blessings!

This week is a busy one. Obstetrician on Monday; Paediatrician on Tuesday; Pregnancy massage on Wednesday; Addenbrookes on Friday. Please pray for wisdom for the consultants we see and strength for Clare as she rushes around to all these appointments.

Wednesday, 29 August 2007

Tomorrow and tomorrow and tomorrow...

...we are going to Addenbrookes for another scan (at least that's what it feels like!). Probably not many more weeks left though and we're getting quite excited!

Clare saw the midwife today and it seems Andy Jr's head is nearly engaged. This is good news! By this stage (34 weeks), most babies are locked into place and can't move too much. However, because his limbs are shorter and there's more room to swim about, there is always a chance he'll be in a awkward position when the waters break and this could mean a tricky delivery. Luckily, this doesn't seem to be the case for him.

Clare's tummy is pretty big now. As a a very rough rule of thumb, your tummy should measure from top to bottom in centimetres the same as you are weeks pregnant. (by that notion, I should be about 26 weeks pregnant as well!). Clare is measuring 40 weeks already!

We also found out today that we've got the same paediatrician as Kara has and he comes highly recommended...Such blessings!

So no doubt I'll be back tomorrow with the latest in the saga. Till then...!

Sunday, 26 August 2007

Knoah's Video

Clare and I are regular readers of Tonya's Blog and she's recently posted a video showing pictures of Knoah. It is a lovely video and can be found here (have some tissues at the ready!)

Saturday, 25 August 2007

That was the week that was

It's been another week of progress and learning! The time is certainly flying by and our boy will be with us before long (what a relief that will be!). So here's what we've been doing...

A visit to see Kara
... well actually Kara's mum, Jan, as Kara was already in bed. Kara is 8, lives near us and has achondroplasia. Jan very kindly put a card through our door after we found out about our boy to say we could come round and talk to her. We spent a lovely evening with her. She filled us in about Kara's life so far, the Restricted Growth Association conference, and generally useful information. Jan has said we can ring her at anytime and we feel very reassured to know that someone has gone ahead of us and can give us advice about what it is like to bring up someone with achondroplasia in the UK.

Hospital Visits
We started at Ipswich at the beginning of the week seeing a different obstetrician who gave us some reassurance about what will happen at the birth. It seems that the labour will be treated as normal (unless anything tricky crops up) but that after the birth, the care will really kick in and baby boy will be seen by a paediatrician straight away. We saw the special care baby unit (again!) and they seem to think that he will inevitably end up in there for at least a few days so they can observe him. Hopefully, he will arrive on time and so won't need to be in there long. If he comes early, he may have a lengthened stay.

We also went to Addenbrookes this week and everything there is progressing well. The consultant seems very happy with how baby is doing. His legs are still growing, although not quite as fast this week. His head may be starting to get a bit bigger now but we will have to see how that develops over the next few weeks. Clare's fluid is slightly up on last week, but not as high as the week before. So, all in all, good news!

Little People, Big World
Mark and Sarah (Clare's brother and sister-in-law) have recorded loads of episodes of Little People, Big World for us and we went round to watch them last night. The series follows the Roloff family: Both parents have dwarfism as does one of their four children. The series is very amusing, mainly due to all the crazy things the kids get up to on the family's massive farm in Oregon. The programs showed a bit of the Little People of America conference, which lasts a week and occurs once a year. It certainly was a fascinating insight and we learnt a lot from it.

Ok, so that's out news! Our boy has stayed in for another week which is really excellent. God continues to bless us as we put our trust in Him.

Psalm 121

1 I lift up my eyes to the hills—
where does my help come from?

2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;

4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;

6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;

8 the LORD will watch over your coming and going
both now and forevermore.

Tuesday, 21 August 2007

A big thank you!

We've now made our blog address more widely known to friends around the globe and have been overwhelmed by the emails we've got back. So thank you very much to everyone who has made us feel loved and supported! Feel free to comment on this blog site if the mood takes you as well. You can click on the little comment link at the bottom of each post to have your say.

Thanks again!
Andy and Clare

Sunday, 19 August 2007

The final countdown....

Clare's extra fluid means that Andy Jr could turn up anytime between now and the due date of October 10th. This lengthy time-frame makes it tricky to motivate yourself that he could actually arrive tomorrow and therefore you need to be a bit organised about things.

Finally the penny has dropped with us and we're gearing up for the birth! Firstly the nursery's done. In a fitting acknowledgement of my painting and decorating expertise, I had virtually nothing to do with it. Many thanks go to Clare, Fran and Clare's dad, Jon, for the frankly stunning result show here.

(Before we get inundated with nursery decorating requests, I should point out that the cute, little sea-creatures are stickers and not hand-painted!)

Clare has almost put together a bag to take to the hospital...well... she's made a list of what needs to go in it! I think the major sticking point is how to fit in amongst all her stuff the vast amount of food I need for whilst she's in labour.

And most importantly, we have an appointment to see an obstetrician on Tuesday who will go through the whole thing with us, including a session with our paediatrician and (another!) visit to the special care baby unit. The obstetrician we are seeing this time is not the one who caused minor upset/panic last time and comes highly recommended so that has put out minds at ease.

By luck or providence (depending on your belief system), there is a lady in Ipswich who is giving birth to a baby with Achondroplasia this week! We are hoping to squeeze in a visit to her, if that is ok with her.

As if this wasn't enough, we are visiting Kara and also have our regular Addenbrookes session on Friday!

So a very busy time all told. Please think of us rushing around this week. I have to fit a job in somewhere around all this but, more importantly, rushing around increases Clare's fluid so pray that she might find time to rest amongst all this excitement.

Thursday, 16 August 2007

Another visit!

We've just come back from another of our weekly visits to Addenbrookes. It's starting to feel like part of our normal routine now! They were just looking at Clare's fluid levels this time which have gone down again slightly. She's had a quieter week and I think this helps with the fluid/pain levels. We have a growth scan next week so we'll let you know how that progresses.

Our consultant in Cambridge is excellent and very friendly. He's been most accommodating about appointment times because I'm trying to minimise time off work. We feel very blessed to have this level of care. He seems to think that Clare could well go to full-term. He has said he will induce her at about 39 weeks if she makes it that long.

Clare also spoke to a lady called Jan today, who lives very near to us and goes to a local Baptist church. Her daughter, Kara, has Achondroplasia as well and we're going round to see them next week. Kara was delivered at Ipswich hospital so that should give us some more insight into how the whole process works.

So overall, we've had a very positive day! All these things continually convince us that, despite adversity and problems, God is in control of all situations.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8 v28

Tuesday, 14 August 2007

What's in a name?

Clare and I were having the usual discussion in response to the question, "So...have you thought of a name yet?" We were going through the list.... Mark*, Jon, William, Arthur...

“Arthur?”, our friends questioned.

“Yes, it might sound a bit old-fashioned, but we rather like it”, was our reply.

“But you can’t call him Arthur…Arthur Dungey….’alf-a dungey…half a dungey!” was the incredulous response.

“Ah… we hadn’t thought about it like that!”

It does beg the question, are we prepared to be parents when we can’t even think of a sensible name?!

* Genuine potential candidates have been omitted to protect people from inadvertently stealing the names we might want to use!

Sunday, 12 August 2007

I'm back!

... although you may be wondering where I've been! Apologies for the lack of posting but Clare and I have spent the last 2 weeks in Southwold doing a Scripture Union Beach Mission there. This is basically a Christian activity camp for kids with lots of fun and mess going on. I was involved with 5-7 year olds, but unfortunately, Clare had to take it easy because she has some extra fluid (more about this in a mo!).

Nevertheless, it has been a great time to gain some perspective and focus on God some more. A huge thanks to the team who have consistently made us feel loved and supported.

During the two weeks, we have had two further scans at Addenbrookes. The highlights of these are:

  • Clare's amniotic fluid level has gone up. This is to be expected with Achondroplasia, because the baby does not swallow as much of the fluid as he should. Consequently, Clare is much larger and more uncomfortable than before. The increased levels means that he may well arrive early, but we’re hoping to make it to at least early September. (The due date is October 10th)
  • Baby's legs are growing! The femur is now about 37mm which is still short (even by dwarf standards!) but on the charts, he is growing at closer to the normal rate.
  • Head and chest are normal size, with no evidence of frontal bossing
  • CCAM is probably still present, but diminishing in size as his lungs are growing.
  • He has hair! And by the looks of it, he’ll have a curly mop, just like his dad!
  • We now have to go for weekly scans at Addenbrookes

The next major decision is where to have him delivered, Ipswich or Addenbrookes. We were reluctant about Ipswich after our previous encounter and really praying about what the right thing to do was. The way God has blessed us with the people we have met will probably form the basis for a completely different post, but we ran into someone at the mission who had nothing but praise for the way they helped when her twins arrived early. This has put our mind much more at rest about Ipswich. Our next appointment is on Thursday so please think of us as we make more definite plans about that.

As I mentioned, Clare is feeling much more uncomfortable and less mobile because of the extra fluid. The baby’s position seems to give her lots of pain in her ribs. This is coupled with painful hips as well because apparently… (the things you learn!)… these get looser in pregnancy! Clare has found this worse at night. A pillow between her legs seems to help but makes turning over a bit of a mission. Remember her in your prayers!

So, I'm back to regular blogging...keep tuning in!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29 v11

Friday, 27 July 2007

Useful Video

In case you aren't an avid reader of Tonya's blog (see the links on the left), here's an informative Video about dwarfism. It's only about 5 minutes long so watch it in your coffee break.

Thanks for Tonya for the link in the first place!

Friday, 20 July 2007

That's my boy!

After a mixed time at our local hospital on Monday, a trip to Addenbrookes was organised for yesterday. I had a meeting at work which I was reluctant to miss and, after much consideration, Clare and I decided that Clare's parents would take her to the appointment. Monday’s visit had left us a bit confused and trips to Addenbrookes have not always yielded good news in the past so we were looking forward to it with trepid expectation.

Well… I think the results speak for themselves!

Clare had a different (but equally helpful) consultant who suddenly flicked the picture over to a 4D image and there was this little face peering back at Clare. We were very, very happy to see our little lad’s face for the first time. Apparently, he looks like me… I don’t know who that’s more insulting to!

The latest is: His head is still a normal size and not showing any of the expected characteristics, such as frontal bossing, cleft palette, etc. His chest:abdomen ratio has decreased slightly but nothing to cause much concern. His legs are still very short, the femur being just 30mm at 28 weeks! But the limbs are still growing though so that’s good.

The 20 week scan showed signs of a cyst on his lung (called a CCAM). This didn’t seem to be present at the last Addenbrookes scan but was back for this one. The good news is it is getting proportionally smaller as his lungs increase in size. There will be no need for ante-natal care but it will need to be monitored after he is born, just in case.

As far as Clare is concerned, she has a lot of amniotic fluid. This will most likely mean that baby arrives early, though it’s impossible to know quite when. This is a concern because we don’t want him just yet! We’re just trusting in God that His timing will be right.

The increased fluid has left her feeling uncomfortable and she is also experiencing pain in her ribs and back. She still remains positive but some days are easier than others. Today was her last day as a teacher, so I think the well-earned rest will do her a great deal of good.

So all told, we have a lot to praise God for! In the midst of difficult times, He continues to bless us more than we could possibly ask. I’ll finish with His word to us… very apt I think!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Psalm 139 v 13-16

Wednesday, 18 July 2007

When only the best...

On Monday, we went for a growth scan in Ipswich, at our local hospital. Up until now, we've been at Addenbrookes which is in Cambridge, about an hours drive from where Clare and I live. Addenbrookes is our region's centre of excellence when it comes to baby things. We've had a very good level of care there and all the people are wonderful!

Because they are considerate people, they suggested that we had an interim scan in Ipswich to save us a drive. This proved to be more hassle than it was worth. Having done the scan, the consultant alarmed us with phrases such as "Obviously, I don't want him to arrive before 32 weeks..."; suggested we arrange a new appointment with Addenbrookes immediately; and then, refused to give us an information about how our boy was actually doing!

*deep sigh*

(It's worth adding that this has been our only bad encounter at this hospital, but it's been enough to put us off going back there for any further scans... I'd rather drive for an hour!)

Anyway, the whole event left Clare feeling very upset, and me absolutely livid! (It's hard to be Christian when you're surrounded by idiots!).

Nevertheless, the outcome is this... Clare has increased amniotic fluid. From what I've read, this is an expected side-effect of carrying a baby with Achondroplasia. Even so, she has been tested for Gestational Diabetes and we will get the results soon. She's also had two steroid injections to mature little man's lungs...just in case he chooses to grace us with his presence a bit early!

As far as I can gather:

  • His arms and legs are still growing (albeit at the same slower rate as before)
  • His chest:abdomen ratio is still good (normal is 0.9, lethal dysplasia is 0.5, our boy is 0.86!)
  • His head has increased in size : ( but seemingly not too dramatically

Unfortunately, I've come to these conclusions by trawling through his notes, plotting graphs, tapping numbers into calculators, etc... so it's still anyone's best guess. It would have been nice to have been told all this, categorically, on Monday but the consultant felt that the results of the scan were not comparable with those in Cambridge ("different operators, different machine")

As a result Clare is going to Addenbrookes tomorrow to get the real story. By the grace of God, she is still feeling positive despite all these setbacks. We will wait and see what tomorrow holds, knowing that whatever comes our way, we believe in a God who is able to help us through it.

"To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen."
Jude 1 v24-25

Monday, 9 July 2007

New friends

We've been in email contact a few times with Tonya and Knoah. Their website is a really interesting read for anyone who's just started on the road we have and it contains loads of useful links. They've been lovely to us so I'd just like to thank them for all the support they've given to us already!

Tonya sent us this link the other day which explains a lot about about skeletal dysplasia in babies before they are born. It's definitely worth a read.

The internet is an amazing resource! Never before has so much information been available so readily. When we came back from the hospital after getting the prognosis, we naturally went on the internet to try and get some more information. Tonya's website was one of the first we came across and it was such a relief to see a beaming Knoah reassuring us that everything would be alright!

Just a word of warning when using the internet though... sometimes you can have too much information and this applies whether you are dealing with Achondroplasia or any other illness. The first thing I (mistakenly!) did when reading the link above was to chart our little one's bones on the graph and check the probable diagnosis. If I read the graph correctly (not my strong point!), this meant either Thanatophoric Dysplasia (which is lethal) or Osteogenesis Imperfecta which is brittle bone disease.

Panic! This wasn't what I thought! But then... Reality check... they've already told us they think it's non-lethal and his bones are perfectly formed on the scan (although much too small!). So it can't be either of those then.

The lesson to learn is the internet is useful but it's the doctors who have the best idea... Not Andy armed with Google! Get some background info by all means, but don't go bananas worrying about all the possible outcomes without some solid evidence to back it up!

I'm a Christian, so I'm probably bias, but I think the Bible has some good advice about taking it one step at a time.

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6 v33-34

Friday, 29 June 2007

Where shall we go on holiday?

How do you come to terms with something as big as bring a "little person" into the world? As usual, some one has said it better than me....

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

© Emily Perl Kingsley 1987

Welcome to our blog!

My name is Andy Dungey and I live in the UK with my wife Clare. We're fairly normal people... I work with computers, Clare is a teacher. We live in a nice house and regular attend our local church. We have lots of lovely family and friends.... Such an idyllic picture!

Here is our baby at 12 weeks....

Isn't he lovely! Life was going totally to plan...until the 20 week scan. There were some unusual issues with him and we were referred to Addenbrookes in Cambridge. The scan revealed that our little boy will have a skeletal displaysia and although they can't be definite until he turns up, it's most likely Achondroplasia.

These are big words for a small problem...literally! Achondroplasia is dwarfism to you and I. They were fairly sure it's non-lethal but there was a cyst in his lung (called a CCAM) to contend with and maybe a club-foot! We would have to wait until the next scan to see how he's doing.

Well that scan has happened this week and, praise God, the little chap is doing really well! The CCAM seems to have disappeared and his chest is growing as it should so they are still saying the condition is non-lethal.

So, why create a blog? We're not after may be less than a month since the first sign that something was not quite right, but we're already coming to terms with the new course of our life. But, naturally when you find out something like this, you turn to the internet to get all the information you can. There's loads of US-based sites about dwarfism (see the top of our links section for an excellent blog in the States), but fewer in the UK.

So this is our purpose... to provide information about dwarfism and how to raise a "little person" in the UK.

We don't know what lies ahead, but we're sure that with God's help we can get through it. And as we find out useful information, we'll post it here so that when the next person gets the diagnosis that will change their life, we can hopefully put to rest some of their fears.

Happy reading!