Well, I’m 34 weeks and 3 days pregnant today, and still waiting. I have had to stop working due to my physical limitations, which by the way, encompass pretty much everything. I can’t get down on the floor to play with my kids, I can’t bathe them, I can’t reach down into the dryer to do laundry. I feel like I can’t do anything, and it’s beyond frustrating. Luckily my husband is amazing and does it all, plus we have an awesome nanny who has been helping out. I am grateful for all the friends who have stepped in to help out. I’m at the point where I don’t have a choice in asking for help. I need help to get through the day.
Last week we solidified our plan for comfort care when baby G arrives. My AFI (amniotic fluid index) which should be decreasing at this point, is increasing quickly due to baby’s declining heart function. Last week it was 37, up from 32 the week before. It makes it hard to move and breathe. It is causing severe abdominal pain and pressure, and my heart rate has been through the roof so now I have to take a heart medication to bring it down. When I was pregnant with Lauren, I was emotionally and mentally exhausted, but the physical pregnancy was a dream. This one has been taxing in every way possible. I only wish that I would have a baby at the end of it all to bring home to make it worth it.
A few weeks ago, I began to join some hypoplastic left heart syndrome (HLHS) groups on Facebook. Like any neurotic person, I have read medical journals, studies, and thoroughly browsed all reputable sources for some sort of “hope”. Of course, there are no reputable sources that depict HLHS with intact atrial septum (IAS) as having any better a prognosis than we were given. Our case was never a “cut and dry” HLHS and the surgery would likely have been worlds more complicated anyways, if he was even a candidate at all. We trust all of the medical professionals we’ve encountered and feel confident we are making the right decision for our son and our family. But you know it’s interesting how support groups (especially on the internet) have a way of becoming really unsupportive when your opinions and decisions differ from others. This is not a curable condition that a surgery or two will fix. I will admit that it is really really hard seeing all the kiddos on these pages who are home with their families, knowing it could be us. But could it? There are so many other moving parts in G’s diagnosis that makes the likelihood of him being one of those kids exceedingly low. If he made it through any of the surgeries, he would be a chronically sick kid. He wouldn’t have the kind of life anyone would 1. want themselves or 2. want for their kids. I have seen women chewed up and spit out over their decision for pallative/comfort care at birth.
You don’t deserve to be a parent. How could you just kill your baby like that? You should have just terminated if you aren’t going to give your kid a chance. You’re a disgrace. How can you live with yourself? You’re going to hell.
The list goes on. The hate is strong and it’s unfortunate that people feel the need to weigh in on something so heavy, private and difficult. Not even one parent who finds themselves in this position has it “easy”. There is no easy way out. This is a club that NO ONE wants to be a part of. I sure as hell wish I wasn’t, and furthermore I would never dream of making a parent feel guilty over their decision. This is not refusing to treat an ear infection. This is not refusing treatment for a condition with a high likelihood or cure or remission. This is refusing treatment that is futile and who’s success leaves a baby sick, weak and without quality of life. This is refusing to cause pain, suffering and prolongation of a life that would be very difficult for everyone involved. I do not feel the need to justify our decision to anyone, and I feel lucky that most of our friends and family have not outwardly expressed (to us anyways) that they don’t agree with our course of action. But man, it hurts. It hurts that there are people out there who think that I don’t deserve to be a parent. I may not be great at a lot of things, but I love my kids fiercely and consider myself a damn good mom. No keyboard warrior will convince me otherwise and they will rue the day they ever try.