My baby is having open heart surgery
And it doesn’t get any easier…
For those of you that know me and my family, you may be familiar with our background and Hannah’s and Charlie’s amazing stories. If not, you can read a bit more about it all here.
Basically, Hannah was born with Pulmonary Atresia with MAPCAs. She had major open heart surgery when she was ten and a half months old to insert a bovine conduit containing a valve to act as a pulmonary valve and to carry out ‘unifocalisation’ of the MAPCAs. She was part of a clinical trial for the bovine conduit they used and the surgery was, after a long and difficult recovery, a huge success.
We were told Hannah would probably need to have the conduit replaced at around age four and then again when Hannah was in her teens, as it can’t grow with her. So far, she has done spectacularly well and still has the original conduit they inserted when she was a baby (she is a very tall 14-year-old). Every year at her annual cardiology check-up at Birmingham Children’s Hospital, we wondered whether the time had come when we’d be told she’d need further surgery, but for years that time never came.
Then, in June this year, Hannah was scheduled for a cardiac catheterisation to measure pressures in her heart and lungs (As part of her condition, the branches coming off the conduit and into the lungs, as well as the blood vessels in Hannah’s lungs, are very small and under-developed. This causes high pressures in her heart and lungs so needs to be monitored closely. On a few occasions, over the years, Hannah has had ballooning of blood vessels during her cardiac catheterisation procedures). We were told they’d take lots of measurements in view of surgery within 18-24 months to replace the conduit with an adult-sized one.
After the cardiac catheterisation procedure, we took Hannah for her annual cardiology check-up in July. By then, the cardiac team had been able to review the measurements and they felt that she’d need surgery ideally within 6-8 months. We were given the choice, given that Hannah starts Year 10 at school in September and the two GCSE years are very important (especially as she wants to study medicine and become a paediatric cardio-thoracic surgeon herself), to wait until next summer – though it may become an emergency before then – or try to obtain a surgery date for this summer.
After we’d discussed it with Hannah (she was very keen on doing it this summer to minimise disruption to her education), we said we’d like to go ahead as soon as possible after our summer holiday.
We were exceptionally lucky to be given a date almost straight away; a date that fitted around our holiday as well. 11th August.
So, having just been on a fantastic holiday in Italy visiting family and watching my little sister get married to a wonderful man, we have been home for just over a week and tomorrow we’ll be packing our suitcases for an unspecified time in hospital.
The technical bit & the emotions
I await Monday with trepidation and anticipation. We have done amazingly well with Hannah. She is fit and well and leading a normal life. She’s not a fantastic athlete but she’s even going to do a GCSE in Sports Studies! She loves sports and wants to learn more about physiology & anatomy as part of her plan to study medicine later.
Having waited for this moment for the best part of 14 years, knowing it had to come eventually, it’s a relief that the time has come. We also know that, if we weren’t to go ahead, Hannah’s heart would risk becoming enlarged and weakened by the increasing pressures caused by the tiny conduit not allowing enough blood to flow out of the heart. She would get weaker and her health would deteriorate; her life expectancy would be shortened. This surgery (replacing the conduit with an adult-sized one and slicing into the ‘branches’ coming off it into the lungs and then ‘patching’ them to make them wider) is essential for Hannah to continue to thrive. It is a lot harder to send a seemingly healthy young lady into dangerous open heart surgery though than it is to send a very weak, struggling baby into life-saving open heart surgery (and that was very, very hard!).
So, I’m at once dreading and looking forward to this moment finally coming. I’m looking forward to being on the other side of it at last!
I’m also looking forward to Monday because, originally, Hannah and Charlie were going to stay in Italy with my mum and fly back that day, rather than drive back with us. Once we found out about Hannah’s surgery, we decided to take Hannah back with us and leave Charlie to continue her Italian holiday; she will be flying back on Monday with my mum. I’ve not seen her since 29th July and I really, really miss her. So I’m also very excited to see her again on Monday, despite it promising to be a gruelling and emotional day.
Tonight, Charlie Skyped us and we had a really good giggle – I have missed having the full family here!
I don’t want to dwell on the risks – they are many and horrifying and we will have to be told them in detail before we sign the consent form for the surgery. But the risks ARE in the back of my mind. It is scary. It’s horrifying. We’ve been through this, and worse, too many times over the years with both Charlie and Hannah, so I know we’ll be ok. I know we have a ‘children in hospital’ mode that allows us to keep functioning and just get through it. I know we’ll be exhausted and emotionally drained. I know Hannah, even though she won’t say it because that’s not the way she is, is probably terrified. I know Charlie’s really scared for her little sister, but putting on a brave face for her.
I am incredibly lucky to have these two amazing daughters who have overcome so much and are still funny, bright and full of the joys of life! I am also incredibly lucky to have a solid marriage that has withstood the stresses that our daughters’ various operations etc have put on it. I would struggle to get through this alone. And last but not least, I am incredibly lucky to have such amazing friends & family willing to offer emotional and practical support at the time we need it most.
So, I won’t feel sorry for myself and I won’t feel sorry for Hannah. I will, however, shed many tears (who am I kidding – this is already happening!), but I will endeavour to keep remembering to count my blessings. I will keep writing down at least three gratitudes every morning and I will get through this. Hannah will get through this and emerge stronger than ever.
And I will do my best – time, emotions and internet connection permitting – to keep you updated via this blog.
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