Dr D

27 June

We went to discuss the results of the angiogram with Dr D.

He showed us incredible video footage of inserted dye moving around the arteries between Little S's heart and lungs and it was clear that the 'piping' wasn't right.

Bad news - there was little in the results to change the initial diagnosis so Dr D reiterated that Little S was going to need major heart surgery and would be likely to need to stay in hospital for about a week afterwards.

The initial operation would be to unhook the arteries that Little S has developed to supply her lungs, fuse the two extra arteries together and plumb them back into the heart where the valve should be.

If that goes to plan then there would be further surgery to create a valve and to close the hole in Little S's heart to get her close to normal plumbing. 

However, there is no guarantee - Dr D mentioned that surgery at the hospital for this kind of operation has a less than 5% mortality rate - mortality rate!

Faced with a statistic like that we felt unable to commit to what rationally must be the right thing to do - Dr D suggested we get a second opinion and I mentioned that we were already informally in contact with Dr E so we'd ask him.

Angiogram

Thursday 2 June

We went to GOSH for the angiogram – we arrived at 11 am and left at almost 11 pm. 

Little S had to undergo a general anaesthetic – our first ‘operation’ - she's been absolutely amazing - comfortable with being in the hospital for so long and recovered really well.

You are not alone

If there’s one thing I’ve learnt so far that I would pass on to anyone else in this situation it’s that however bad it seems – you are not alone. Others have been through similar trauma – many of them came through it. It’s not a cure-all message but it helps, slightly.

Heart Children

We received a book in the post - Heart Children - from HeartLine Association which provides lots of information about heart defects – what they mean, how they are addressed, what to expect from a heart operation. Grim reading but somehow reassuring that there are many others out there that have been through the same hell and emerged on the other side.

As we let people know about Little S we’ve found that many friends and family have been, or know people that have been, through similar difficulties – again reassurance – we’ll grab anything at the moment that makes things seem a tiny bit more normal.

The weekend

Sunday 15 May

We’ve spent the weekend at the in-laws and watched the Eurovision song contest.

Over the last few days I seem to see ‘heart’ everywhere: TV, radio, conversation, music, even the Eurovision logo – tormenting me that our daughter’s heart doesn’t work properly.

Diagnosis heart defect

Friday 13 May

Went to GOSH to see Dr D – Little S needed an echo scan to check the source of the heart murmur. Dr D told us that there were significant problems with Little S’s heart – she does have a hole between the lower two chambers (ventricles) of her heart but she is also missing the valve that allows blood to flow from her heart to her lungs. She has been supplying her lungs with blood via extra arteries that she developed before she was born!

In medical terms Little S has pulmonary atresia with verticular septal defect and multiple aortopulmonary collateral arteries: left pulmonary artery from left subclavian and right pulmonary artery from right coronary artery.

Dr D spent a fair bit of time with us, seemingly putting other appointments off, getting a second opinion from his boss and checking the current health of Little S’s heart with an ECG and an oxygenation test – her heart is working fine. But, even though she has no obvious symptoms, we were told that Little S has abnormal internal plumbing and is unlikely to live a normal life for long.

Little S looks and acts like a perfectly healthy baby with no outward symptoms of anything like a major heart defect. So we were in shock when Dr D broke the news to us and told us that ‘we would be spending quite a bit of time with each other over the next months and years’. Little S needs further tests (an angiogram) to ensure an accurate diagnosis.

We left GOSH in a numbed state, only interrupted by the fact that we had to figure out how to get the kids back from school as we took a lot longer at the hospital than expected. To be honest, we thought that they would do a scan and tell us that she has a small hole in her heart that would probably close on its own in time – this was not the case.

Diagnosis heart murmur

Thursday 7 April: Little S has been diagnosed with a heart murmur. It was picked up by a routine check by a paediatrician at Chase Farm hospital shortly before we were discharged. We have been referred to Great Ormond Street for a scan to confirm whether she has a hole-in-the-heart as it would take too long at Chase Farm.

Little S is born!

Tuesday 5 April 2011: Gorgeous Little S was born this morning! What a bundle of joy!