Our Newborn’s Struggle
As some of you may know, our little nephew Noah was born with a serious congenital heart defect. At just 3.5 weeks old, he was flown to the Royal Children’s Hospital in Melbourne for corrective open heart surgery. It was expected that he would spend up to 2 weeks in Melbourne to monitor his recovery.
Noah has been faced with many setbacks that were unexpected, and more recently, he has undergone a second heart surgery. Unfortunately, for Noah and also his proud parents Emma and Sean, the thought of being at home for their first family Christmas is becoming a distant possibility.
Our beautiful baby nephew Noah was born in September 2016 at 38weeks. Emma was induced early to avoid going into labour at any time and so that the necessary team of cardiologists and specialists could attend his birth. After not being satisfied with heart images at a second morphology scan, Emma and Sean were referred to a paediatric cardiologist in Adelaide for a fetal echocardiogram, where they diagnosed Noah with a rare and critical form of congenital heart disease, Truncus Arteriosus, with a VSD (ventricular septal defect). CHD occurs in approximately 1 in 100 births, and Truncus approximately 1 in 10,000. It occurs when the main blood vessel coming out of the heart fails to separate properly during fetal development, thus sending too much blood to the lungs and making the heart pump harder to send blood to the rest of the body.
Hearing the diagnosis completely rocked their world. They wondered if the baby that they had longed so much for was even going to survive. They knew Noah was meant to be part of their lives and they fell in love with him the minute they found out that Emma was pregnant. I’m sure every parent would agree that there is no other love like it.
Series of Surgeries
Emma and Sean were told that soon after birth, Noah would need to be flown to RCH in Melbourne for life-saving open heart surgery to correct his truncal valve and VSD. This 7-hour surgery was completed when Noah was almost 4 weeks old. Unexpectedly, he also has a single origin coronary artery that branches into two. Noah has now been in Intensive Care for nearly 7 weeks experiencing several complications, including one that has meant he has not been able to feed at all. He is the strongest little boy we know and has been fighting for his life ever since the day he was born. They have since discovered he has an abnormality to the veins supplying blood to his brain on the left side, and he has suffered a seizure and a small stroke.
Noah’s Open Heart Surgery Journey
Noah has also just had his second open heart surgery, which was very complicated and difficult. During this surgery, he suffered a cardiac arrest. It isn’t known yet if he has sustained any brain damage. He now has more artificial tubing in his heart, and this will need to be replaced probably when he’s an adult. Noah will require ongoing surgeries as he gets older, as the conduit valve will not grow with him. This means ongoing cardiology care and corrective surgeries/procedures for the rest of his life. As Noah has been in ICU a significant amount of time, he has not been able to develop as well as he would have at home. Emma and Sean have been advised a neuro-developmental team will need to be on board to help with his development and recovery moving forward. When Noah is finally home, he may need speech therapy, occupational therapists, and physiotherapists to name a few. He will likely catch up to his peers, developmentally and weight wise as well, but it could take a long time.
The journey with CHD has only just begun and we will all do whatever we can to help Noah live the life he deserves. He’s a beautiful little boy and Emma and Sean love him more than anything in the world. We are all blessed to have him in our lives and are all so proud of his superhero strength and determination every single day. Emma and Sean would gladly trade places with him if they could xxx
Should you wish to support Noah in his recovery you are able to do so by donating through this page.
All donations will go directly to Noah’s recovery and support Heartkids SA.
Thank you for your love and support.
EDIT: On Thursday 15th of December, Noah endured yet another 3 hours of surgery, this time to correct an issue with his diaphragm which was causing difficulties with his breathing. What an amazing little man to have gone through 3 surgeries in such a short amount of time.
Recently I asked Emma and Sean if they could provide me with an update on Noah’s condition that I could share with friends. With Emma and Sean’s permission, I have decided to post this update within the GoFundMe page so that everyone will be aware of where Noah is at right now.
Emma and Sean are terrified beyond words at the thought of possibly losing their beautiful baby boy, and want to continue focusing on making whatever time they have with him full of love, laughter and making memories.
Emma has needed to take extended maternity leave from work as, like any child, Noah requires 24-hour care. Noah’s difference is that he requires medication and nasogastric feeds, hospital admissions and several appointments per week. This leaves it very difficult to get by and pay the bills, many of which are medical related.
Over the past 17 months, Sean has also needed to take months of unpaid leave when Noah was in ICU, both in Adelaide and Melbourne.
They both obviously want to spend as much time as possible with Noah, doing fun things with him, but it is very difficult to do that when there are bills and a mortgage to be paid.
If you can help in any way at all, whether that be by donating money or leaving a wish or prayer, myself, Emma, Sean, Noah and our whole family would be extremely grateful. Thank you xoxo
Please read the below update from Emma and Sean:
“We just wanted to share with you an update on Noah’s progress.
He has had an amazing but extremely rough start to life, and after a couple of months finally at home last year Noah became unwell again and after a few weeks in intensive care in Adelaide he was flown via RFDS to Melbourne again where they implanted a stent into his innominate vein where his graft meets his own native vein.
This saved his life, and he picked up within only a few days and we were back home before we knew it, settling into our new home and enjoying life as a family again, away from the hospital.
Noah has many teams involved in his care and has had weekly visits to physiotherapy, OT, hydrotherapy, and more often than not, cardiology appointments too. After we came home in July last year, Noah really started to progress well in many areas. His weight gain was slow but we managed to get his feeding tube out for quite a few months, and he started talking more and really just developing this amazing little personality. If you’re lucky enough to know Noah, you will know that he is the sweetest, most happy little boy and hasn’t seemed to let his struggles impact on his love for life. If he didn’t have some obvious signs that he was unwell, you would never know just by looking at him, because all you would see are bright blue eyes, blonde curly hair and the biggest, cheekiest smile!
Even though he was doing so much better, we could see that he was gradually changing and deteriorating, and this, unfortunately, meant his heart was working much harder than it should. We celebrated Noah’s first birthday at home late September, then in October were told that surgery was likely to be on the cards again within the next 3-4 months. As we were in the hospital for Noah’s first Xmas, we were able to have a family Xmas at home for 2017, have Noah christened on NYE, and then two weeks later we flew to Melbourne again for his stent to be dilated, and with the hope of possible surgery.
Mum and I had only been in the hospital with Noah a mere few hours when his cardiologist visited and instantly knew that his stent was blocked. We knew he wasn’t well and needed treatment but we did not know how severe it was. That same night, as Sean & Ashleigh were getting off the plane in Melbourne, Noah haemorrhaged right in the middle of dinner. Luckily enough we were only minutes walk from RCH so we raced back there where he continued to bleed and was rushed into intensive care, requiring medication to stop the bleeding, morphine to settle him down as the crying was making the bleeding worse, and a blood transfusion as he had lost so much blood. Things were under control when Sean and Ash arrived at the hospital. Noah then began to bleed again, and he arrested right there in front of Sean. Another MET (medical emergency team) call later and we looked on helplessly as they began CPR on our baby. We were so lucky that things unfolded the way they did, as they were able to get his heart rate back after a few minutes. He was then put on life support straight away where he stayed for a week. There aren’t words to explain what it felt like watching that happen to our baby right before our eyes and not knowing in that very moment if he would make it through.
As the true little warrior he is, Noah fought very hard. Dad and Sam joined us in Melbourne first thing the next morning, and as a family, we all supported each other through what had been the hardest road for Noah yet. He bounced back again enough to come back home to Adelaide after only a few weeks.
These events, along with his test results during this admission, sparked conversations that no parents should ever have to have or think about. We were offered a palliative approach to Noah’s care, but we feel as his parents, the best choice for us all was to keep advocating for Noah and we have chosen to continue to pursue active treatment for Noah for as long as there is something they are able to do for him. We, of course, want Noah to live a long, happy and healthy life, but we are just trying to focus on getting through the next week and the next month, to enjoy time with our baby and hope the very best for him. We want to give him the best life possible for however long we are lucky enough to be blessed with him by our side.
The doctors and surgeons are not sure what they are able to do for Noah. Extensive genetic testing has been done and nothing has been detected that explains any of his health issues. A lot of them are post-surgical complications but without surgery in the first place, Noah would not have survived.
We have headed to Melbourne again this week and Noah is scheduled to have a cardiac catheterisation done on 19th March. This will have a detailed look at his heart and they will look at his stent at the same time. His team have been looking at different options to increase the longevity of his stent. The vein/stent is the only way his brain can drain blood (as his right-sided veins no longer work) so without a patent stent, the blood has nowhere to go, therefore Noah’s life depends on it. He will also potentially have open heart surgery that same week, but this will have no bearing on his stent, as they are separate problems. Please keep Noah in your thoughts and prayers, it means so much to us both.”