Joe and Danielle’s sons, Lennox and Sonny, were both born with serious heart conditions. Lennox has aortic stenosis, which was not detected until he was critically ill. His little brother, Sonny, was diagnosed with hypoplastic left heart syndrome (HLHS) during Danielle’s pregnancy.
Joe and Danielle, now pregnant with their third, heart healthy, child are dedicated to raising funds and awareness for congenital heart disease (CHD).
Here, Joe, tell their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Lennox had undiagnosed critical aortic stenosis, a heart defect that presented itself at just three days old.
When we took him to hospital, little did we know he was in peri-arrest and all his organs were shutting down. He was rushed into resus to be stabilised by the incredible team at Southampton General Hospital.
On day four, he had his valve ballooned. He was then unstable until eight weeks old. We were in and out of hospital with breathing issues, weight issues, NG tubes and more. Lennox was not coping, and he had to have the Ross procedure (open heart surgery) at eight weeks old.
He had a rocky recovery in PICU, but is now nearly six years old and absolutely thriving in school, currently in Year 1. He has no symptoms at all. His consultant regularly says on his yearly checks that he can’t quite believe how well Lennox’s heart has recovered from that awful day when we first took him into A&E. We are so very lucky to have the team we do at Southampton and we appreciate them all so much. He will need more routine surgeries in the future to replace his valve when he outgrows it but for now he is doing amazing.
As a result of our experience with Lennox, our next pregnancy with Sonny was closely monitored by consultants. At our 20 week scan, Sonny was diagnosed with Lennox’s condition – aortic stenosis, with possible coarctation. We left this scan heartbroken and deflated, but we had a plan in place and knew it wouldn’t be an emergency like Lennox, and our baby would be safe. We quickly came to terms with this as watching Lennox around us all day everyday thriving like he was, helped a lot.
However, at our 28 week scan, Sonny’s heart had not developed and he was diagnosed with hypoplastic left heart syndrome (HLHS). We were taken into a side room where we had one of the most gut wrenching and awful discussions of our lives. We were told that our baby’s condition was life limiting and most HLHS patients don’t make it past 30 years old. His life would not be like a normal child’s and he would be tired and blue. It was honestly so awful.
We were given three options: to have a medical termination, to carry on with the pregnancy and let Sonny pass peacefully with us when he is born, or to carry on and go with a series of three (palliative) operations to prolong Sonnys’ life. It was crushing news and we had tough decisions to make, but we decided to give our boy a chance.
Sonny has had two out of three open heart surgeries so far, whereby his heart has been re-plumbed so his right ventricle does the job of two ventricles. His third open heart surgery should be at around five years of age. He is currently thriving too. He does have limitations, and now he’s that bit older we are starting to notice him needing to take more breaks, napping a little more and becoming out of breath.
We want other parents, facing similar conversations to the one we had a 28 weeks, to be able to read stories like this. It’s not all doom and gloom. Sonny lives a very normal life. He does get tired and has to take breaks, and there are most definitely still heart-breaking appointments and harsh realities to his condition, but he is living his best life! The medical world is also developing, and we can only hope that in the years to come there will be better ways to help our single ventricle babies cope and live longer lives.
We try not to think of the reality of Sonny’s condition as this is something we have both really struggled with, but we live in the moment and are so very lucky to have our boy here with us.
We have experienced both early detection and no early detection and therefore feel passionate about sharing our story. We feel we are in a unique position to be able to help others. We also feel that had we known the signs before having Lennox, we most definitely would have caught it sooner.
Early detection certainly helps you plan, process and come to terms with the trauma that will unfold, as well as become educated on the condition. In my opinion, knowledge is power. We didn’t have that with Lennox – being thrown in at the deep end was a horrific and traumatic experience and something we would love to be able to prevent for others. We urge new parents going through the diagnosis stage to join the parent support groups and ask about the conditions. You will receive so much support from Tiny Tickers and other parents – it really helps.
The support we received from Tiny Tickers was immeasurable. The Facebook groups, the one-on-one conversations, the phone calls, emails, the reading, guidance and signposting was all welcomed and much needed. It’s a loving and caring community that we are so grateful exists.
We have since raised nearly £15,000 for this amazing charity and love to support where we can!
We are now pregnant with our third baby. So far we have had two detailed fetal medicine scans carried out by a cardiac team. We have been so well looked after yet again. Our baby’s heart so far looks amazing. Completely as it should be! We are so relieved. These appointments have been very emotional and stressful, but we can’t thank the teams that look after us enough. We will have more scans at 28 weeks, 34 weeks and then our baby will have a scan when they are born.
We are so hopeful and feeling very positive. Lennox and Sonny are SO excited to be big brothers.
Photo credit : Ian Whittaker
Find out more about congenital heart disease, include different types of heart defects, here.
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