Theo's second birthday

First of all, sorry it's been such a while since I last posted. It's been a hectic few months but I know that's no excuse!

Today, Clare and I remembered our son Theo. As has become tradition, we went to Southwold and said some prayers for him at the end of the pier. We also released two balloons. The sunset was beautiful again and we really had a strong sense of God's presence with us.

The whole day is probably best described in pictures...

A huge thank you to everyone who was sent us cards, emails, texts and so on. It makes such a difference knowing that people are thinking of us!

Theo's Song

The song I've written in memory of Theo has been finished for a while now but I've only recently got round to uploading it. It's called "The Gift" and can be found here. It's instrumental so there's no lyrics but hopefully the sentiment is clear.

On the same web page is another tune I wrote called "Big Brother" which is slightly more hectic than The Gift but more in line with the kind of music I generally listen to. Please don't feel you have to persevere with this one if it disagrees with your eardrums!

I would appreciate any comments people have both stylistically and in terms of production quality. I'm after constructive stuff so please let me know what you really think!

If you have any problems with playback, let me know.

Theo's Birthday

Clare and I are both at home today with a cold but at least it gives me a chance to catch up on blog-world and post about Theo's birthday.

We both took the day off and we went to stay in Oulton Broad about 50 minutes away from Ipswich. We started the day at Thrigby Hall which is a small wildlife park. It's more open than a normal zoo and lots of the animals are not in cages as such. For example, you are only separated from the tigers by a double layer of wire mesh. It's big enough to stick you fingers through but luckily the gap between the two layers is large enough so that you can't actually poke the tiger! It still lets you get pretty close though!


We also saw Red Pandas (my favourite!) and dropped leaves on a crocodile's head to see if it was still alive. I wanted to drop my bottle of water on its head but Clare said no!

In the evening, we went to Southwold Pier (where we scattered Theo's ashes last year). It was a beautifully clear, moon-lit night. We let some balloons go from the end of the pier and said some prayers.


The next day, we got both families together and went out for a Chinese meal to celebrate Theo's birthday. It was a really great day and it was nice to have both families there. Typically, I forgot the camera so no pics of that I'm afraid!

Overall, it was a lovely weekend! Although there had been some sadness in the run up to Theo's birthday, the actuall day was very happy and it was good for Clare and I to get some time away by ourselves.

Anyway, in my slackness, it seems that there are still two more holiday locations I've yet to blog about. So come back soon to hear what we got up to in L.A.

One year on...remembering Theo

It seems like a cliche, but it really doesn't feel like a whole year has passed! On this day last year, we welcomed and said goodbye to our son Theodore. Over the last year, we've been through times of happiness and times of great sorrow.

Theo was only with us for a short while. Some people spend their whole life looking for their purpose in life...searching for the one thing that will make an impact and cause their name to be remembered always. Theo managed to achieve this in just 4 and a half hours. That was all the time God required of him here before his work was done. Although Clare and I don't fully understand why his time was so short, we know God's will was done because we see it in the effect Theo's life has had on other people as well as ourselves.



We are certainly changed by all this. In some ways we are older, wearier and more battle-worn. But in others we are stronger, firmer in our faith and more trusting in God. The good surely out-weighs the bad.

As Clare and I look back over the past, we also look to the future. We don't know what's around the next corner for us but we know that we will make it through because we trust in a God who promises to be with us always. He hasn't always made it easy for us over the last year but he has always been there for us. We know we can rely on God because he has a track-record of not letting us down.

Finally, a very big and heart-felt thank you to everyone who has supported us over the last year. In many ways, big and small, you have made our journey easier and for that we are extremely grateful.

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 1:24-25

Baby Loss Awareness

Moving away from our holiday tales for this blog entry... please remember baby loss awareness day which is the 15th October. Clare and I will be attending a service at the chapel in Ipswich Hospital this Sunday. Clare has written a poem in remembrance of Theo which she will read at the service. Please remember all those who have lost children in your thoughts and prayers at this time.

The Gift

Just a moment together,
A tiny glimpse of the life that was yours,
The face I had never seen, but knew so well,
A reflection of the love that brought you into being.

All too soon, the moment was gone,
Your soul was free,
In the arms of your loving Saviour,
Pain and sorrow blown away.

I felt the grip of overwhelming loss,
I felt my soul begin to fall,
My Lord reached out His arms and caught me,
Wrapped me in His ineffable love.

He showed me a picture of a mother,
The warmth of love in her face,
Her heart bursting with pride,
Then He lowered the mirror.

I am blessed because God chose me,
To hold your precious little body,
To love you unconditionally,
To be your mother,

Forever.

You are my gift.


By Clare Dungey
Mother of Theodore Edward Dungey – 10th October 2007

The results

Firstly, sorry it's been a while since I last posted anything. Both our jobs have been very hectic over the last month or so and it's been hard to find time to fit everything in. Thank you to everyone who faithfully checks the site!

We received our genetic results this week and they were not as positive as we had hoped. Our geneticist told us that they had found the genetic "change" in Theo that they were expecting. This confirms the Kniest diagnosis reported by the post mortem. Having tested my blood, they also found the same genetic change in some of my blood cells. This means that I exhibit mosaicism in these cells - some of them are regular and some are dwarf!

It is safe to assume that at least some of my sperm cells are affected in the same way as this is how Theo got the condition. In the worst case scenario, all of them will be affected and this has led the geneticist to give us a 50% chance of recurrence. Although, potentially the risk could be lower than this, it is very difficult to determine what percentage of sperm cells are affected so they have to go with the worst case scenario.

The presence of a genetic marker means that pre-natal testing will be possible at about 11 weeks. At the moment, Clare and I are still coming to terms with the situation and so have no clear idea of what we are going to do next.

Prior to getting the news, we had already decided that it would be wise to seek the counsel of a couple in our church to help us along the way. In addition to this, we had also considered that professional counselling might be a good idea too. Now that we have the results, we are definitely going to proceed with both of these.

We are also planning to see the genetic counsellor again, once the dust has settled, to ask him further questions about our options.

Sorry to have to break this news to everyone via the blog. Both Clare and I really value your continued prayer and support!

Waiting

Today is the 5 month anniversary of Theo's birth and death. It has passed largely without incident or upset which I take as a sign that, although life is still hard at times, we are both slowly coming to terms with things. Clare is cooking me a nice dinner of toad-in-the-hole as we speak (despite being a bit under the weather!).

We are still waiting for the results of Theo's genetic tests and my x-rays. The waiting seems to be harder than the grief these days and it's so very hard to be patient when all we want to do is start our family.

We had a church weekend just over a week ago and, whilst looking through the book stall, a book jumped out at Clare because of its title..."Wait". The book contains a poem that's apparently done the email circular rounds in the past. It talks of how God is capable of giving us everything we want but often tells us to wait because it is by doing this that we learn more about him and grow in Christ. The words of the poem are truly inspired!

Wait by Russell Kelfer Desperately, helplessly, longingly, I cried; Quietly, patiently, lovingly, God replied. I pled and I wept for a clue to my fate... and the Master so gently said,"Wait." "Wait? you say wait?" my indignant reply. "Lord, I need answers, I need to know why!" Is your hand shortened? Or have you not heard? By faith I have asked, and I'm claiming your Word.
My future and all to which I relate hangs in the balance and you tell me to Wait?" I'm needing a 'yes', a go-ahead sign. Or even a 'no,' to which I'll resign. You promised, dear Lord, that if we believe, We need but to ask, and we shall receive. Lord, I've been asking, and this is my cry: I'm weary of asking! I need a reply.
Then quietly, softly, I learned of my fate as my Master replied again, "Wait." So I slumped in my chair, defeated and taut, and grumbled to God, "So, I'm waiting...for what?" He seemed then to kneel, and His eyes met with mine... and He tenderly said, "I could give you a sign. I could shake the heavens and darken the sun. I could raise the dead and cause mountains to run.
I could give all you seek and pleased you would be. You'd have what you want, but you wouldn't know Me. You'd not know the depth of My love for each saint. You'd not know the power that I give to the faint. You'd not learn to see through clouds of despair; you'd not learn to trust just by knowing I'm there. You'd not know the joy of resting in Me when darkness and silence are all you can see.
You'd never experience the fullness of love when the peace of My spirit descends like a dove. You would know that I give, and I save, for a start, But you'd not know the depth of the beat of My heart. The glow of My comfort late into the night, the faith that I give when you walk without sight. The depth that's beyond getting just what you ask From an infinite God who makes what you have last.
You'd never know should your pain quickly flee, what it means that My grace is sufficient for thee. Yes, your dearest dreams overnight would come true, but oh, the loss if you missed what I'm doing in you. So, be silent, my child, and in time you will see that the greatest of gifts is to truly know me. And though oft My answers seem terribly late, My most precious answer of all is still "WAIT".

We know that the sentiments expressed in this poem are true of the God we put our trust in. Although loss and waiting patiently are hard to bear, we believe God uses these things to develop our faith and character so that we can become more like Him.

Theodore's Photo Album

Hi All, Clare here! Thought it was about time that we shared some more of Theo's Photo Album with you. We also wanted you to meet the people who have supported us and stood by us whenever, wherever and however we need them - our Family. We are so grateful they were able to be a part of that special day we had with Theo.

So on with the album...!

It's Time!

Sunday 30th September - The day before Induction Day

It's Time - Take 2!

Sunday 7th October - The day before our 2nd Induction Day

Theodore Edward Dungey arrives at 3.56am on 10th October weighing 6lb 10oz. He is suffering from severe respiritory problems. After 5 hours of hard work by Theodore and the doctors, we all agree that our little boy has tried his best and decide that he should spend his last few minutes on earth in the arms of his Mummy and Daddy.

He's here!

Mummy has her first long-awaited cuddle.

Joy and Sadness
Daddy holds his son for the first time.


Chubby Cheeks!
Mummy and Daddy note that he has not escaped inheriting their chubby faces!


Our Little Man
Theo has very short forearms and legs as predicted in scans. Mummy thinks that this makes him even more special and beautiful!

Shortly after, Theodore peacefully leaves to be with his Heavenly Father. Mummy and Daddy are filled with sadness but agree that Theo is now in the best place waiting for them.

Back on the Ward

Theo is brought down to the ward to spend the day with Mummy, Daddy and their families.

The Grandparents

Grandma & Grandad Richardson

Grandma Dungey

Grandpa Dungey


Aunties and Uncles

Auntie Sarah & Uncle Mark (Clare's Brother)

Uncle Adam (Clare's Brother) & Auntie Lizzi

Auntie Juliet (Andy's Sister)

Andy's brother, Tim, also rushes from London to be with us. We spend the day cuddling and enjoying Theo. During the afternoon, Mummy washes and dresses Theo in his own clothes, including the cardigan knitted by his Grandma Richardson.

Handsome Little Man!

In the evening, the family leave and Mummy and Daddy prepare to say goodbye to Theo, safe in the knowledge that he is with his loving Lord and Saviour.

One very proud Mummy!

Our beautiful little boy - Theodore Edward Dungey

A picture paints a thousand words!

A while back, I posted the pictures Clare took of Southwold on the day we scattered Theo's ashes. About the same time, we went to visit my parents and Clare admired the "cascade" sunset print they have on the wall in their lounge. My mother, being the clever woman that she is, put two and two together and came up with an excellent idea for Clare's Christmas present using the Southwold photo. As a DIY-phobe, I had to wait for help from Clare's dad before I could get round to hanging it. The result is here:


It now takes pride of place in our lounge and is a lovely reminder of our boy!

In other news, I went to the hospital today to have a skeletal survey done. They x-rayed my legs, spine, arms, ankle and pelvis. The x-rays will be sent off to Great Ormond Street so that they can determine whether I have a mild form of the condition they think Theo had. This will hopefully inform us better about the likelihood of it happening again. I imagine it will take quite a while for the results to come back so I will post any news when we get it.

So, I'm trying to keep my word about posting more often! In the next entry, Clare will post some more pictures of Theo.

He is definitely 'our gift'!

Thought it had been a while since we had posted...I should warn you though that this is Clare typing, not Andy so this entry may not contain the usual wit to which you have all become accustomed!

No news I'm afraid so we continue to wait - Andy in his usual calm, reasonable manner, me in my, 'Why haven't they called?!!' frenzy! We will, of course, let you know when we hear anything.

Andy and I were talking the other day and I casually mentioned that I had begun the process of writing a song for Theo, to which he replied that he was also writing a song for Theo. I asked him what it was called and he said that he had decided to call it 'The Gift'. My song is already titled 'My Gift' so I'm guessing Theo is definitely our gift! When we have finished them (which may be quite a while!) we will put them on the blog.

I have also decided to put some more pictures of Theo on the blog very soon so watch this space!

Like Father Like Son

Yesterday, we had our first genetics appointment. Although we've had a lot of input from various doctors regarding the genetic side of Theo's condition, this was the first time that we had talked to someone who was fully qualified to comment on the genetics.

We found out that Theo's genetic samples have yet to be submitted for testing as they were waiting for the go-ahead from us to proceed. Now that they have that, the samples are going to be sent to a laboratory which specialises in skeletal dysplasias. The geneticist told us that they might be able to get the work done at Cambridge, but failing that it would need to be sent abroad. The time scale is 2 months in the best case, but could be anything up to 6 months.

The results of Theo's genetic tests should hopefully reveal that he has the gene that causes SEDC/Kniest and so confirm the original diagnosis. If this is the case, it will mean that they have a genetic test which can be conducted at about 12 weeks into pregnancy if that is what we decide to do. In the absence of any such test, early growth scans should be able to pick up indications of a problem.

So far, so good... but now we get to the chance of recurrence. As a back drop to this, the problems associated with Collagen defects (such as SEDC/Kniest) include eyesight, hearing, bone growth, early on-set of arthritis, spine and joint issues, amongst others.

Now as a under-average height, arthritic, half-deaf, flat-footed, talipes-affected, loose-hip jointed kind of guy... this set off a few alarm bells! Although the geneticists we saw whilst Clare was pregnant didn't seem that concerned with my various ailments, it turns out they might have more of an impact than originally thought now that the diagnosis has changed from Achondroplasia to Kniest or SEDC.

It is possible that I have Mosaicism with regards to the collagen defect which effected Theo. As I understand it (and here comes the science part), this would mean that a certain subset of my cells would be affected by the defect and, if this were the case, would account for my one or two problems. If my sperm were effected, it would explain how Theo ended up as he did.

In terms of predicting the likelihood of it happening again, it gets a little tricky. As I understand it (and I probably don't!), if I suffered from this problem, and all my sperm were defect, then that would leave us with a 50% chance of recurrence. If only 1% of my sperm were affected, that would take the percentage down to a half.

Unfortunately, it seems unlikely that they will be able to give me a percentage sperm defect amount and so we may not be able to find the exact chance of it happening again.

But, before we get too ahead of ourselves with the doom and gloom, they haven't said that I have this problem yet. It's just an avenue they think is worth exploring. My issues could be all coincidence. After all, I lost my hearing in one ear when I was 3 so that probably isn't genetic... the arthritis could just be a result of my bad legs. The are going to take x-rays of my long bones, spine, etc and send them to Great Ormond Street for examination. That will give them more of an indication of whether they think I'm affected.

So that's the score. I haven't covered everything off because it gets quite detailed and I don't want to bore people with technicalities! If you want to know more information, drop me a mail and I'll fill you in.

How does this make us feel? A bit despondent, if I'm honest because we were quite hoping that it would just be "one of those things" and we wouldn't have to worry about it again. Also, we're going to have to wait even longer for answers that may be difficult to take and require us to make hard choices.

Nevertheless, we know that God has a plan and that this plan is good. We know that He will help us on this new path and give us the strength to get through it because He's done it before. So, we are in the process of picking ourselves up and getting on with it. Please pray for us, particularly Clare as she's taking this quite hard and had really hoped we could move forward with our family in the near future which seems unlikely now.

I will keep you posted with more news as it happens. Thanks for reading!

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!

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