Last week I shared the very heartbreaking story of baby Hudson Slater, and the eulogy his mom Andrea wrote, which I posted here. If you haven’t read it yet, please do – it’s something very special.
This week Andrea tells us about her the Hudson Initiative, which she started to inform moms of congenital heart disease in kids, and raise money. It’s quite a long post, but well worth the read from this amazing mom.
Tell us about Hudson’s birth, diagnosis and treatment?
Hudson was born on the 14th January 2013. Life changed, as most mums know, only for us, life changed again two days later. We were actually incredibly lucky. For whatever reason, I hadn’t made it to the nursery for his daily check-up with the pulmonary paediatrician and he (the paed) had come to my room to do his checks.
If the check had been conducted in the nursery, chances are he wouldn’t have heard the murmur and we’d have been sent home. Hudson would’ve simply died anything up to six weeks later and we’d probably have called it SIDS.
A little-known fact: one in five infant deaths that are mistakenly identified as Sudden Infant Death Syndrome are actually CHD related, as are a further one in five “unknown” causes of death among infants – so 20 percent of infants who die under these circumstances could have stood a better chance with a little bit of awareness.
But he did find what he thought was a murmur and Hudson was diagnosed by a paediatric cardiologist after lengthy ECG scans and tests as having a Congenital Heart Defect (CHD) called Truncus Arterioses. Whereas 1 in 100 babies are born with a CHD, only 1 in 7 000 are born with this specific defect.
Truncus is where, instead of having two arteries entering and leaving the heart sending oxygenated and deoxygenated blood around the body, he had one “trunk” as well as a hole between the two lower ventricles. So his blood wasn’t being prepared, distributed or managed well by the heart and his lungs were under pressure because of it. He was strong though and we were sent home to fatten him up for surgery which was scheduled for the 27th February.
Professor Robin Kinsley and his team performed the surgery and were properly chuffed with the results. Hudson flew through recovery but picked up an infection once he’d moved into the general ward, which we only found out about five days after he’d been released. So it was back into hospital for us for another 11 days but once we’d passed this patch, things really were on the up and up.
Hudson died suddenly. Was there a “reason” or diagnosis?
The only sign we had that something might have been wrong was the development of a small cough the Wednesday/Thursday before he died. His six week check-up was scheduled for the Friday so we kept an eye on his temperature and his finger and toenails, which turn blue when CHD babies are under stress.
We were sure all was fine and even now, fellow CHD mums say they would’ve done the same. I now think, but will never be sure, that the cough was a sign of failure and the guilt that goes along with knowing I could’ve prevented his death is unending. However, guilt is not an emotion that helps and I’m hoping therapy will help Hudson’s dad and I move past this.
As to a reason or diagnosis, at the time of his death we (Hudson’s father and I) decided not to have an autopsy performed. They called it natural causes and we made a call to trust that his heart just couldn’t anymore and leave it at that. Reason being, his little scar had healed so beautifully, we didn’t want to cut him open again. Our son had been through so much in his short life, we wanted his death to be, I suppose dignified is the word I’m looking for.
Today, his cardiothoracic surgeon is so baffled by his death that I question our decision frequently but it is what it is at this point.
What made you start The Hudson Initiative?
Flowers. I despise cut flowers. They represent death to me and I wanted none of that at my son’s funeral or in my home during our grieving process. So, we asked people straight away to not send flowers but to rather donate money to The Hudson Initiative which, at that stage, was just a bank account.
We were going to use whatever funds we collected to do something special in his name. At the time, my thinking was toys for kids recovering from surgery or books for mothers who spend inordinate amounts of time in paediatric general wards slowly losing their minds while their kids are recovering.
By the time we were done with the funeral, we had a few thousand rand collected and then someone, we still don’t know who, deposited R10 000 and I realised that this was going to be bigger than I’d imagined. I knew then that raising awareness around CHD was going to become Hudson’s legacy and that I’d have to lift my head up and do something.
What are you hoping to get out of the project?
I want mothers to take control of the choices that are made during their pregnancies and after the birth of their children. If I’d known about CHDs, I would’ve asked for a screen at 20 weeks that looks specifically at the heart and I would’ve demanded a Pulse Oximetry test just after he was born.
The 20-week scan ensures that the heart is in the right place, has all the necessary valves and ventricles, for instance, and the PulseOx test gauges the level of oxygen in the infants blood – the lower the oxygen levels the higher the risk of a CHD.
We’re investigating the possibility of having a law passed that makes these scans compulsory, as right now they are not and I’m hoping our participation will result in it being called Hudson’s Law. This is a long process and will not be realised soon so for now, I will continue with our awareness efforts.
In Hudson’s specific situation, not much would’ve changed except that I’d have been more aware about how I behaved during the pregnancy but for other mothers these tests can make a world of difference.
If mothers find out about potential CHDs during pregnancy they can make smarter choices. Natural birth, for instance, is quite traumatic for babies and places immense pressure on their hearts, so, mothers can opt for Caesarean sections rather to ease the journey.
Some CHDs are very high risk and many babies die during labour or just after birth. Aware mothers can ask for a paediatric cardiologist to be present at the birth and, when necessary, a surgical team can be prepped and ready to perform necessary procedures.
How can people help?
I’m busy trying to register as an NPO so we can properly raise funds but we’re accepting donations from friends and family in the meantime.
We’re looking for partners – after mailing them with a birthday wish, 702 has agreed to partner with me in my efforts to do something big and worthwhile for CHD Awareness Week next year February (7th to the 14th) and a team has been set up at FleishmanHillard, where I work, who will be helping me in conceptualising and planning the event and activities around it – but we need help.
Every hand, every offer of help and every cent will count towards creating awareness and educating moms going forward.
What is the one thing you want people to know about CHD?
If your child is diagnosed with a CHD, trust your gut. Be one of *those* mothers. If something smells wrong, take your child to the closest hospital and ask for a PulseOx test.
Call your paediatric cardiologist en route (and choose him wisely – we still haven’t even heard from Hudson’s cardiologist since calling him on the morning he died and asking for help) and make sure they turn up to check on your baby. Be one of *those* mothers.
Stuff the rest. If I’d trusted my gut and taken my son for a check-up, he’d be here today. It’s true, I don’t know what he’d be going through or what he’d be facing but he’d be here.
You can find out more about the Hudson Initiative on Facebook. Find their page here.