Friday, 1 May 2009

Baby Update

My son and his fiance went to see the consultant today. He carried out another scan and confirmed that the baby does have Polyplastic Left Heart Syndrome - long winded scary name. In simple terms it means that the left side of the heart has not developed. At the moment this isn't a problem to the baby - he is getting all the oxygenated blood that he need through the umbilical cord. Yes I did say he, the other scan was wrong on that account!


The heart condition is not curable. So, they have been given three options. A termination now, in the next few days, let the baby go to full term, then let him slip away peacefully after a few days or third a series of operations. The operations are in no way a cure, this condition can only be 'cured' by a heart transplant and the chances of that in a 2 day old baby are improbable ( and the thought of another set of parents having to go through the loss of their child to save this little one, is also unthinkable) but the series of operations can be 'help' slightly, the first at 2-3 days old, the second around three months and the third at about a year old. Although the operations can 'help' there is still great uncertainly about long term prognosis, although the consultant says that life expectancy and quality of life is increasing year on year, however a heart transplant will still be required later in life..........

The two of them are feeling a little better after talking to the consultant. He is one of three people who have conducted this operation at Birmingham Children's Hospital where the little one would be transferred to as soon as he had been born, ready for an op in his first couple of days. Other than the heart condition, he is growing exactly as he should and currently weighs 1lb 3oz - I was staggered to know that they can estimate the weight so accurately now.

So, they have a decision to make, probably the hardest one that they have to make. I'm pretty sure I know what they will decide, but I'm waiting for them to finally confirm it.

I hope I sleep better tonight, the past two nights have seemed to have gone on for ever, not helped by the fact that I am at home and Himself is still down at work, oh and he should be off tomorrow for the weekend, but his contracts manager managed to get one of the trades to come in tomorrow morning, so Himself wont be home for the weekend until at the earliest, late tomorrow afternoon. I hop he sleeps well tonight, he's been really tired and stressed this week.

Have a good weekend, I hope the weather is kind.

3 comments:

dubgirl said...

Hi, what a difficult situation to be in,I'm so sorry to hear about the baby, sending you and your family virtual hugs, take care x

Roxie said...

I don't know your faith, but my pastor's youngest was with a defect that he was missing his 22nd chromosome. He had a thread of a left pulmonary artery and the doctors told them that it would never form, its either there or its not, and they believed in faith that our Heavenly Father would make a left pulmonary artery develop and it did. He also had a heart operation at birth. He has overcome all of the horrible reports they were given, and is a thriving little boy of six. If you would like to talk to my pastor about any of this, the church's phone number is 724-643-8885. He will discuss this with you in full. Prayers abound to you and your family.

Frogdancer said...

That's horrible news. I hope that whichever decision they reach, they find peace with it.