tefenie at When life hands you a broken heart is holding the second annual “Every Heart has a Story” Blog Event. Congenital Heart Defect (CHD) families share their stories, and links to their blogs so that connections can be made between families and experiences. I know over the past months, I have benefited from reading other CHD stories, so thought we should share our story too. For friends and family, this will be nothing new. Here is a summary of our story so far….
We are pretty darn new to this CHD journey. As I write this, only six months in, I am keenly aware that a lot of Mr Wrigglesworth’s heart story is yet to be told.
My pregnancy with Albie was so full of wonder and anticipation. I was desperately excited about being pregnant and I revelled in all the womanly glory of carrying our first baby – even the morning sickness which lasted most of the pregnancy! I had all the scans, ate good food – everything was normal.
I had been at my sister’s two homebirths and witnessed the beautiful, gentle way her children were introduced to this world, and so we choose a homebirth too. We even chose the same midwife. She was super experienced – a midwife for thirty years, and a homebirth midwife for twenty years, so we were totally reassured by her wisdom. And with the hospital literally just down the road, we knew that if we needed it, more medical help was a very quick car ride away.
As the due date grew closer, I became more and more committed to this natural home-birth. I read endless positive birth stories, watched stacks of natural labour videos, posted positive affirmations around the house (much to the humour of my friends), attended weekly pregnancy yoga class, listened to hypnobirthing CDs, chose appropriate aromatherapy oils, gathered candles, organised the birthing pool, put together a labouring playlist. I was the personification of someone wanting to do it naturally and unassisted. But our boy had other plans.
Labour started and progressed as I had imagined. And then somewhere in the birth pool, in the fog that is intense labour, things went awry. Suddenly, seemingly out of the blue, his heart rate plummeted really low. As in really, really low. I can remember vividly the midwife saying, ” We need to go to the hospital NOW” and me inherently understanding the urgency. So to the hospital we rushed, and there our baby boy was born – via emergency c-section, in a flurry of florescent light, stainless steel and hospital gowns. There was nothing gentle about it all – no low light, no quiet music, no chance for a welcoming embrace from me for him. Instead, he was whisked away. His oxygen levels were low and they weren’t sure why. For those first few hours after his birth, as they figured out what was going on, I was in recovery and he was in the neo-natal ward. And its strange, because in that time, I was only worried about the big chasm that existed between us and how much I wanted to go to him. I never once thought that he was anything but perfectly healthy.
Our world was blown right out of the water when a pediatrician came in and told us that our boy had a serious heart defect. The details of his condition swam in one ear and straight out the other. What I did hear was that he needed to go to Starship Hospital in Auckland as soon as possible, because they couldn’t treat him where we were. And I couldn’t go with him. There had been a major earthquake in Christchurch, and all the medical flights at that time were ferrying the injured. Wrigglesworth was certainly a priority to get to Auckland but I was not. Before he went, the medical team trundled me up in my bed so that I could see him in his and then he was whisked away, with my husband, to Auckland.
The two days I spent immediately after his birth without him, were quite literally the hardest of my life. I was empty and so confused – full of excitement that he was finally here in this world and yet truly aggrieved at the way in which he was experiencing his first days – in Auckland without his Mumma. I missed him intensely.
I joined Wrigglesworth and my husband as soon as I could and it was then that I began to get my head around his heart condition. He has transposition of the great arteries (TGA), a ventricular septal defect (VSD), pulmonary stenosis (PS) and sub-pulmonary stenosis too (SPS). There is more info about these in the ‘his heart’ tab. He had a balloon septostomy in the days after his birth and this put his oxygen saturation levels in the early 90’s and we were sent back home. It was expected that this would see him through to when he was much bigger and then he would need the Rastelli operation, which is a type of open heart surgery. But one thing I sure have learnt in the last six months, is that with CHD, nothing is for certain.
One Sunday afternoon my husband, Marcus, noticed Mr Wrigglesworth was looking blue. I still feel bad that I didn’t notice, even though he was in my arms at the time. When we got to the hospital his oxygen saturation levels were down around 60%, and we were flown back up to Starship hospital in the early hours of Monday morning.
After a number of tests, it was clear that his pulmonary stenosis was worse and basically there was not enough blood getting through into his lungs. Wrigglesworth had a BT shunt put in on April 1 2011. This moved blood from his sub-clavian artery directly to his lungs, without going through his heart. It will see him through to when he is big enough for his Rastelli operation. It was hard to see him in Intensive Care again, but he recovered from the operation well. It was amazing how quickly all the wires, drains and tubes got removed.
He got necrotising enterocolitis after this operation and this set us back a bit. Part of his bowel died so they had to rest his digestive system with the hope that it would regenerate. It did, and his bowel is fine again now, but it meant he had to be nil by mouth for about 10 days. This was another hard time for us. I smelt of milk and he wasn’t allowed any, so he would get pretty upset in my arms. It was easier to not hold him at all which made me cry a lot. Poor Wrigglesworth must have wondered what was going on! Marcus did such a good job of consoling him and we slowly got feeding back together once his nil by mouth stint was over.
If you have a CHD baby and are keen to continue breastfeeding – through all the medical interventions and ongoing hurdles, I recommend that you get as much help as you can get, as early as you can. Breastfeeding through all of this, has been very far from easy. Its been a hard, hard slog and I have become reluctant friends with the breast pump but I am proud to say that he is still breastfed. He needs calorie topups after every feed down his NG tube, but the majority of volume is from me. Yay! There is a lot of research that states that cardiac babies that are breastfed put on more consistent weight gains that those that have formula, so stick with it if you can. My sister has been remarkable, as have the lactation consultants at the hospitals. Ring in all the help, advice and support you can. You definitely, definitely need as much as you can possibly get.
We left hospital, some 58 nights after we arrived. It was pretty immense. Coming home was joyous and strange and frightening. And it has taken us an equally long time to find our groove at home. With the regular top-ups after every feed and the medications and weekly weigh-ins, it’s hard to relax into it all, you know? But we have, just recently I think, started to make some sense of this. And I am now trying to stop waiting for the next operation and just enjoy where we are instead. Some days it’s definitely easier said than done, but more often now I am thankful and humble and excited by our lives ahead.
So yeah – that’s our heart story so far. Kind of. Its been good for me to write it out like this. Sorry its so long. There is a lot missing too – I have told you scant nothing about how amazing Marcus has been through this all, or the endless support we have had from family and friends or how choice our wee boy is either. But hey ho, its a start. As is all of this. I look forward to making some connections with other CHD’ers. Much love to you all from New Zealand, The Wrigglesworth family.