Charlotte Adorjan’s Guest List: My Broken Baby

Charlotte and I have a lot in common; both copywriters, both have a Woody, both have a name begin with the letter C. Ok,  I’m stretching it now. One difference is that I am very fortunate to have two healthy kids. I am absolutely in awe of Mums like Charlotte who cope when, in her words: ‘their babies are broken’.

Here she tells us about her and Woody’s on-going journey:

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• We first found out there could be a problem at our 12 week appointment. 

• Our much-waited-for scan, which for once had been going well (we’d miscarried three babies before) suddenly took a turn for the worse. The consultant looked concerned and said: “Sorry, there’s a problem. The baby’s probably either got Down’s Syndrome or a heart condition.” And I hate to admit it, but after crying for what seemed like forever I remember praying desperately that it was his heart. You can fix a heart, I thought. Right? (I now know Down’s Syndrome would’ve also given us a precious, unique baby too. Hindsight is a funny old thing.)  

• The heart condition was confirmed a few weeks later and then a new feeling crept in. I didn’t want this baby. I wanted a ‘good one’. Why did we have to have the broken one after all the sh*t we’d been through? Seemed unfair. Could we please just start again?

• But as the baby grew I became quite protective. It may be broken, but it was mine. Perhaps after all the miscarriages it was the baby I was supposed to have all along.

• Nearing Woody’s due date I grew very apprehensive. No one was quite sure how bad his heart was or what would happen once he came out. They knew he had a hole in there but not how big. I often hear pregnant mums say they want to keep their babies safely tucked inside them for a bit longer. I wanted my gestation to last until he was eighteen. I felt complete terror that he’d come out and drop dead the minute he was born.

• But he was born, pulled out quickly because I wasn’t allowed to push for too long or risk stressing his heart, and he did really well. Perhaps his heart would be okay. Only time would tell.

• So we were packed off home with our tiny newborn and told to ‘look out for signs of heart failure.’ Y’know, ‘blue lips, struggling for breath, death etc…’ Sure, we thought. No problem. We’ll take on that responsibility even though WE’VE HAD ZERO MEDICAL TRAINING AND CAN BARELY WORK OUT HOW TO CHANGE HIS NAPPY YET.

• So obviously we ended up in A&E. A LOT. Every sniffle, we were told to take him in ‘just in case’. And each time the doctors would gather round and take it in turns to listen to his ‘crazy heart murmur’. We started to feel like he was pretty special. He drew crowds. But we’d trundle off home still feeling like we were living with a time bomb. Like an exploding nappy, we felt his heart would pack in at any time.

• Then they told us after six weeks of watching and waiting that his hole was ‘pretty significant’. So big in fact they weren’t sure ‘why he’s not in complete heart failure’. The consultant’s exacts words.

• When you tell people your baby’s got a hole in the heart the number one thing most people say is: ‘Oh that’s very common. So and so has one and they’re okay…’ This is the single worst thing you want to hear.

• Herpes is common, I don’t want my baby to have that. This wasn’t a sock that needed darning. This was the very thing that kept him alive. Having a baby with a hole in his heart was pretty damn uncommon for me.

• So they decided they would need to fix his heart (plus repair the damaged valve that so far had been keeping him alive.) But not yet. He’s too small for such a big operation. (WHAT DO YOU MEAN BIG OPERATION? CAN’T YOU JUST DO IT THOUGH A KEYHOLE OR SOMETHING? PICK IT LIKE A LOCK? LASER IT FROM THE OUTSIDE??) Nope. Open-heart bypass surgery it had to be.

• We had to wait fourteen long months until he was deemed big enough to go through with the surgery. I had counselling in the months leading up to the operation. How could they be stopping my baby’s heart and then starting it again? The thought simply made me want to throw up.

• Then the day came. Everything seems quite foggy looking back. I know I cried when I had to sign the consent form and see how likely it was he might die.

• I know I whispered to the anaesthetist, “Please…when he’s in there, call him Woody. He won’t know his other name, Elwood.”

• I remember my husband and I falling asleep on the grass outside as we waited for it to be over. I guess our bodies’ way of coping, escaping instantly in to sleep.

• Seven hours and thirty-two minutes later we could go and see him in intensive care. He was covered in tubes and sliced down the middle. I called out to him, desperate to let him know I was there, but in his drugged-out state he got distressed and they asked us to leave. It was, quite simply, horrendous.

• The next day we were allowed back in to the ICU. And there was our boy. Sitting up in bed drinking a bottle of milk looking like he’d been out on one hellova bender. Turns out he’d pulled out his own breathing tubes and stabilised once they’d stopped pumping him full of drugs.

• ‘You’ve got a fighter there’ I remember the lovely ICU nurse saying.

• I look back on that time waiting for him to recover in hospital as strangely blissful. It was over. He was safe. We’d waited for that feeling even before he was born. We promised him we’d take him to get an ice cream the minute he was out. We were desperate to do something ‘normal.’

• And normal life did return. Which was weird. After being such a strong unit throughout ‘the op’, my husband and I would bicker over who was doing the laundry. When times are tough, nothing else matters. Now we had to readjust to the usual grind of life.

• Three years on and Woody’s doing great. (Touch wood – clearly still paranoid and superstitious and will be forevermore…) We’re due to get his yearly heart-check tomorrow. (There’s a very small chance he might have to have the surgery one day again.) Going back to that place is always tough. Physically on him and mentally on us. But it’s time for us to learn to see him as a normal, robust little boy, and not the delicate little time bomb we had to once hover-over. Easier said than done.

• When you have a baby they say the love you feel for them is like having your heart living on the outside of your body. You will worry about them forevermore.

• I’m so glad I got a broken baby.

• I think it’s my heart that may one day explode.

  If you need support coping with a baby with a CHD, do get in touch with tinytickers.org They’re amazing.

  Early detection is crucial in survival rates for many CHD babies.  Tiny Tickers are training sonographers who will go on to save hundreds of babies’ lives. They desperately need donations to continue their work. You can donate here: tinytickers.org/donate