This is an account of the perspective of one heart dad’s experience with a child with CCHD (complex congenital heart defects). This is especially for those who are just receiving a diagnosis for their child – read to the end, even if the beginning seems scary!
Anxiety. Fear. Panic. Despair. Those are a few of the things that went through my mind in April 2018, when my wife, Kim, and I found out at 20 weeks in-utero that “something” was wrong with our baby’s heart. A few weeks earlier, we had been told that there might be an issue, since things weren’t measuring quite right, but they needed to do a fetal ECHO to be sure. And then, in April, they told us that indeed, one of our baby’s ventricles was not measuring where it should be. They said not to panic, that it could still grow, but they would do follow up scans to see where things were at.
I won’t lie, that day in April was devastating. The cardiologist that spoke to us was saying things like, “shortened life expectancy,” “still living fulfilling lives,” “some patients live to be in their 40s,” and other very scary things, even though she meant them to be comforting. This was not the news we were expecting to hear after suffering four consecutive miscarriages, and then having just seen our baby kicking around all over at a rarely-done eleven-week ultrasound that we had had a few weeks earlier.
A visit to Google did not turn out much better. Some of the statistics and studies that talk about outcomes for children with CHD are very frightening to look at, especially some that were done even just a few years back. Not to mention the talk in these articles about possible additional defects, and learning difficulties and delays. That first week was a blur of numbness and tears and worries. As time slowly crawled on, nothing changed with her heart, and by July, we were meeting with a pediatric cardiologist, who was telling us our daughter’s diagnosis, and using all sorts of unfamiliar terms. It seems our daughter had several issues: a hypoplastic right ventricle, pulmonary atresia, a double-inlet left ventricle, a double-outlet right ventricle, and dextrocardia. On top of not knowing what most of those things even were, we also learned this meant she would need almost immediate surgery after birth, because she did not have a pulmonary valve, and within days, would have no way to get oxygen, without surgery. And we also learned that she would eventually need two more surgeries – a set of staged surgeries that many in the CHD community are probably familiar with, the Glenn and the Fontan, being the 2nd and 3rd stages. We were left with so many unanswered questions – how are we going to handle this? What do these things actually mean with her heart? How long will she be in the hospital? What will we do with our other children? How are we going to afford this?
By this time, we had several pictures of her, and we could feel her kicking all the time; she was so strong! In many ways, this was the worst time of it all – we felt so helpless. It seemed there was nothing we could do, even though the doctors told us that, in terms of her heart, this was the “safest” time, because all the plumbing was working in reverse and using Mommy’s heart and oxygen; but still, somehow, it seemed being able to hold her, or hug her would have helped – if not her, then us.
And so, we continued going to frequent doctor’s appointments, and still nothing changed, in terms of her heart. Then, at 37 weeks, Hazel came a little bit early and was born on August 12th (her due date had been September 1). Luckily, because we knew beforehand, we had time to get everything in order, and we had time to adjust to what was happening – thinking back on it, although that time was horrible then, this was the greatest blessing that we found out early and had time to get everything in order and adjust, rather than being confronted with it at her birth – making arrangements for our other kids, setting up a surgeon to do Hazel’s operation, clearing schedules to be in the hospital, etc. So, when Hazel was born, they already had us in a special operating room, in case anything needed to be done immediately. As it happened, she was relatively fine when she was born, and we were allowed to hold her for a couple of minutes, and they even let us baptize her right then, and got everything ready for it. And then they took her to a special table, to check how she was doing. They then had to take her away to do an ECHO on her heart, and my wife had to stay behind in the room, while I went with Hazel for the scan in the PCTU (pediatric cardiothoracic unit). They also had to begin giving her medicine, so that her ductus arteriosis would not close (another word I didn’t know – a part of the anatomy all babies are born with, but normally it closes shortly after birth, and in Hazel’s case, if hers closed, she would not have had a way to get oxygen, because she had no pulmonary valve.) Although she had all kinds of wires and cords connected to her, they told us that we could hold her whenever we wanted, and they said all we had to do was ask, and they would help get her out of the crib for us. Needless to say, we held her a lot! At a tiny four days old, Hazel underwent her first open heart surgery, to have a BT-shunt placed; the surgery went very well and she remained in the PTCU for a couple of days, and then moved to the less-intensive floor. Again, we could hold her whenever we wanted throughout, and then we were home by August 28th, sixteen days after she was born and twelve days after surgery.
The next several months were somewhat difficult, as her next surgery – the Glenn – had to be timed just right, so that she grew enough to be ready for it, but not too much that she outgrew her shunt. That meant we had to keep a very close watch on her food intake, to make sure she ate enough and use a scale to measure her every day and also use a machine to check her oxygen saturations a couple times a day. Also, I had to learn how to feed her through an NG (nasogastric) tube, because she had some difficulty drinking by mouth, so whatever she did not eat with her mouth, we had to supplement through her feeding tube (my wife already knew how to use one, because she is a nurse). None of this was difficult to do, it just took some getting used to. By the time January rolled around, Hazel was five months old, and it was time for her second surgery. She underwent her second operation on January 15th, and again, fortunately, things went very well. We were back home again seven days after her surgery.
After the second surgery, many things relaxed. We no longer needed the scale. And they told us not to check her oxygen levels any more at all. A few weeks after her surgery, many of her medications were discontinued. She began growing up, and thriving. That’s not to say nothing was different; it was, and it is. We have had to change some of our practices during sick season, since she has lower oxygen levels already, anything like a cold or flu that impairs breathing, could wind her up in the hospital. So, we avoid crowded places in the winter – that means, no going to the store, or restaurants or church with her, during the “sick months”; this will probably relax within the next few years, but for now, while she is still young, this is just a change we need to make. Another thing that is different is your interaction with other people, regarding your child that has CHD. Most other people simply don’t understand, even when you explain to them what CHD means, and what is going on, they still “don’t get it” – there just really is no way to quite understand until it is your child that has it, until you spend nights worry about what your child’s future might look like, and thinking about that a common cold could be a serious issue for your child.
All that said, Hazel lives a pretty normal toddler life. As everyone who has been through this journey will tell you, every single CHD journey is a unique road, full of its own bumps in the road. And the journey is a marathon, not a sprint. Some journeys are full of hurdles and some have less. Hazel has had her share of complications, but thank God, most of them have been very minor. But all in all, Hazel has been extremely blessed! Fast forward to now. Hazel will be 18 months February 12th, and she is doing very well! Her current cardiology schedule is a visit every six months for a check up, and the people that evaluate her cognitive developments have decided that she is right where she needs to be and we no longer need them to come out (though, we do have them come anyway, just so they can keep an eye!) And she is expecting a heart-healthy brother to be born in about two months!
Another positive for us was that we learned that many states have financial aid programs for children in situations with qualifying conditions like this, and our state was no exception. So a big part of our worry – how can we afford all these surgeries – we just assumed we would always have a bunch of medical bills, but it turned out the financial aid helped greatly. Ask to see a social worker at your hospital about this, if you are in this situation!
At the end of the day, we of course don’t want this to be her reality, but as much as we all like to think that we do, we don’t have any control over these kinds of things. Some days, it is a hard pill to swallow to think about the things that could happen; the “what ifs” are really the hardest part of it all. The surgery Hazel has already had, and the next one she will have, not only puts her at risk of having a stroke or “cardiac event,” it puts her at *high* risk. And the next surgery – the Fontan – also can have disastrous effects on her liver over time. But this is the best that medicine can offer at this time. It would be short-sighted to only consider the risks, when the fact is, she is not even two yet, and there are people now living with this same or similar things who are in their thirties or older. Only about forty to fifty years ago, almost every child with this kind of defect succumbed to it within days. By the time Hazel, and others born now, are that age, cardiac medicine will likely change dramatically, and there could even be a cure for this by then. Already they are working on blood pumps, new hearts that have a patients’ own cells so they are not rejected by the body, and several other promising things, and government funding for research into these things is increasing as well. The future for those with CHD is brighter every day!
Meanwhile, if there is anything I have learned over these last 18 months, it is that life is precious. So, whether we have eight minutes with Hazel, or eighty years with her, we will love her with our whole hearts, and we will live every day to the fullest. Even if things had gone differently, and she had not done so well, I would not trade a single second that we have spent with her, from the moment she was kicking inside my wife, to a few minutes after she was born when she grabbed my thumb and squeezed it, to now, when she runs all over laughing and screaming, terrorizing her brother and sister. The truth is the same for all of us, heart-healthy or not: we don’t know what tomorrow will bring. This was illustrated very dramatically for me just this past December, as my Aunt and Uncle both passed away suddenly after being involved in a motorcycle accident. We just don’t know what is in store for us; but God has all the cards, and He has a plan, so all we can do is pray, and live life to the fullest, with love.
My advice to anyone reading this who has a child that just received a diagnosis of CHD or CCHD would be: don’t despair. I know things seem horrible right now; and they might for a while, and maybe they should. It isn’t an easy thing to go through. But things do get better. There is light at the end of the tunnel. So, for now, try to avoid Google. Reading about things on there will only show you worst-case scenarios, and it isn’t going to shed much light on your unique situation anyway. Pray. Spend time with family. Prepare for the baby. And then, just try to remember, once you see your little baby, everything will change. The moments we spend with these little heart warriors, they are all the more precious! All the grief and all the tears – a single smile from them makes it all worth it!
By Jeff Ausmus, Hazel’s Dad