Having a child with a congenital heart defect is placing me in a new state of fear. I have been scared for Dominic's life ever since I learned about his complications during that third ultrasound... And even before really. These little lives that we women have the honour of carrying are so fragile.
I have had the opportunity to connect with a few parents while Dominic was in the hospital here in Saskatoon as well as in Edmonton who have children with other heart defects. One of whom I witnessed them be informed that there was nothing more the doctors could do for their son, and they had to make that tough decision of when to let him go.
Two other of these brilliant mothers (and one fabulous dad) that are from Saskatchewan have babies that have far more severe heart problems than Dominic. These other two itty bitties (although not so itty bitty anymore being over 3 months old!) were born with severely under developed left sides of their hearts, known as Hypoplastic Left Heart Syndrome (HLHS). One baby was diagnosed in utero, the other was not (it blows my mind that Dominic's was diagnosed so easily when he had only one valve rather than two, yet this other baby was MISSING HALF OF HIS HEART and the ultrasound tech and radiologist failed to notice). These two little boys' hearts will never function as well as a normal heart would. There has only been a surgical option for repairing this heart defect since the 80s, prior to that babies didn't survive long. Each stage of the 3-procedure surgery is rittled with complications, the surgeries are so complicated and the babies so fragile that it is not uncommon for babies to die during or between procedures. Plus there is no definite life expectancy post the completion of the surgeries because it's so new that the oldest survivors are only in their 30s...
The point of this whole story about other peoples babies is that although Dominic has several problems to deal with, these babies have one big huge one, and that is scarier than I can imagine. I have learned so much from these women and dad, and that's a good thing, but it has given me more to think and worry about.
The one mom and dad told me that their son was discharged from hospital and home for a day before they realized that anything was wrong and the indication came to then in the form of a low body temperature. Had they not noticed, or decided it would resolve itself, their son may not have survived.
The other night I thought that Dominic's hands were a bit on the cold side, so I took his temperature every time I was up to feed him. It never did dip below 36, but I still didn't get much sleep that night. Dominic sleeps in a bassinet in our room but I still worry about waking up to find out that he never will. I am still very concerned about moving him into his own room. I have an angel care monitor... but... still...
I am now hypersensitive to his every move, or more importantly his lack of movement. I am not above grabbing a foot to take a pulse at any moment, although normally I don't actually take a pulse because he moves or tries to pull away when I do.
Dominic is in a very stable position with his heart now. This last surgery healed him to the best that his heart can be healed. I can't imagine having a baby with a more serious ailment, where their heart would never function like everyone elses. I probably wouldn't allow myself trips to the bathroom.
At the same time, life is a part of death. We were born to die if nothing else. It will happen to everyone. I just hope that Dominic and Rosalie and Brayden outlive me.
I can only imagine what a parent would feel, but I try to imagine, to understand. I think about this sort of thing quite often, even before Dominic came around. It may be sort of "cliche" when everyone talks about how amazing it is that so many of us turn out fine when there are so many things that can go wrong. But it TOTALLY IS amazing. All the paranoia that expectant mothers feel when they're carrying their babies ... really there are so many things that can go wrong.
ReplyDeleteI'm always so thankful that things have gone so well for our little Dominic, but it is scary to think what might have happened even 40 years ago if he'd been born in a different time. And maybe hardly any of us would be here if we'd been born in caveman times. And I don't just mean that we'd have gone nuts from lack of cell reception ;)
Anyway, I have only my paranoia to relate to what a parent with a kid with a real heart problem or any condition would feel. I know I'd wake up nights when L was small and panic because I couldn't hear her snoring. But I know, and probably knew at the time I never really had anything to worry about. But still, I'm scared to death of losing her to a drunk driver or something. Something that no one can ever prepare for, but does happen, but we just have to keep going along this track we're on. Nobody can prepare for things like that, and unfortunately we can't all bubble-wrap our families and hide in our houses all our lives. Damnit.
- JMc