A Guest Post
The author writes at On the Road to Crunchy Mama
I’ve wanted a baby for as long as I can remember. My mom says as a toddler in daycare, when kids’ parents showed up, I’d be the one getting them in their jackets and chivvying them to the door. I started working in the nursery at church with my mom long before I was officially old enough to do so, and had my first babysitting job at 12. I started working as a nanny shortly after I got married (couldn’t previously because those jobs don’t have insurance). So all that to say, I had been getting a bit impatient about the baby thing for a while. But my husband and I had the sense to take things fairly slow. We got married after almost 5 years of dating, and didn’t rush to have a baby afterwards. Still, around our 4 year anniversary, we decided it was time to start trying.
We got pregnant quickly, and were thrilled, but at 9.5 weeks I started bleeding and an ultrasound showed that the baby no longer had a heartbeat. We grieved, healed, and tried again, only for me to miscarry again, this time at 5 weeks. But finally, a few months later, just a month before our first baby would have been due, we got pregnant with what seemed to be our “rainbow baby.” I was due September 6th, just 4 days after my own birthday, and we were nervous, but happy.
Everything seemed to be going perfectly. The baby’s growth was on track, I was able to check the heartbeat whenever I wanted with the doppler my cousin loaned me, and we were finally starting to breathe easy and believe that this pregnancy might finally end in a healthy baby. Then at 20 weeks, during the standard anatomy scan, we were told that the baby (who we found out shortly after was a girl) had a moderate hydrocephalus. The ventricles of the brain are always supposed to contain fluid, but they should never be larger than 10mm at the most. Her’s, at 20 weeks, were both around 20mm. We were devastated, but still hopeful. At that point, there would be brain damage, because the fluid was taking up space that her brain needed to develop, but it could be fairly minor. And even the worst outcome with 20mm ventricles would still allow her a good quality of life.
At that point our options were explained to us, based on the different ways things might progress. If things stayed mostly the same, and the fluid build up didn’t get any worse, I’d probably carry to term, around 37 to 39 weeks, at which point she would come on out and they’d place a shunt (a tube that would run from the overfilled ventricles in the brain all the way to her abdomen, where it would drain the fluid). Then we would just have to wait and see how much her brain was able rebound from the compression it had been under from the fluid.
If the ventricles did keep growing, hitting around 30-40mm, they would recommend a c-section around 34 weeks. That’s when the risks of prematurity would cease to outweigh the benefits of early intervention, and she would be strong enough for the surgery. The treatment would be the same, inserting a shunt, and she would probably be in the NICU till around the original due date, so a month or two. In that case, we don’t really know what the damage might look like. It could be more severe, but since they’d be able to intervene sooner, she would have those extra two months of development without the hydrocephalus.
And if things got drastically worse, with the ventricles growing up into the 50, 60 or more range, then we were probably looking at no hope at all. She either simply wouldn’t survive, or we’d consider going to a state that allowed later termination, because at that point we really would be looking at a worst case scenario for her. There would be no quality of life possible.
We continued to go in for ultrasounds every few weeks. At 24.5 weeks, there was virtually no growth in ventricle size, which was encouraging. But at 28 weeks, they had increased fairly significantly, to something like 26-28mm on one side and 32-34mm on the other. That was a lot of growth in a relatively short time (four weeks), especially since she had another six to go for sure (remember they said 34 weeks was the earliest they could deliver, because before that the risks of prematurity would be too great, and she’d be too small to handle surgery anyway). We began making plans to deliver via c-section at 34 weeks, and started researching what we would need to do to get her the therapies she’d need, since she was definitely going to be special needs. I was scheduled for my first steroid shot, which would help her lungs develop and make the early delivery safer for her.
We had a doctor visit scheduled at 30w5d, which started off with another ultrasound. This one was just 2 weeks after the previous, which is close enough that the ultrasound tech wasn’t even sure she should bother taking measurements, because that’s not long enough to show much growth. However, the ventricles had enlarged significantly, to the point that the larger was up into the 40+ range. Worse, her head had not grown, and the increased fluid had further compressed her brain, so that the damage was now catastrophic. The neurosurgeon said that at that point the odds were in the “high 90’s” that she would never progress mentally beyond infancy. And she still had at least 3.5 weeks left before she could be delivered and the ventricle growth halted, so it would only get worse.
I don’t have any copies of her scans (nor do I want them), but a quick google search turned up some images that are comparable. The first is a moderate hydrocephalus. The fluid is the black area, and the surrounding grey is brain. The second is very similar to what we saw at this appointment. Basically the entire top half of her skull was full of fluid, so that the image was almost all black, with virtually no grey left at all. Her scan actually had even less grey around the edges than this image does.
This news left us with three options. One, we could deliver at 34 weeks as planned, have the shunt inserted, and simply see what happened. More than likely she would survive, because her brain stem was still unaffected (meaning she would still breathe and her heart would beat, etc). When the brain is that severely compressed, there is some risk that when the pressure is relieved by the shunt, the brain will spring back too quickly and tear the blood vessels supporting it. The odds of that are only around 10% however, so she would probably live. But she would have no quality of life, no higher brain function, no ability to live in any sense of the word that truly matters.
Our next option was to carry to term, and let nature take its course. No shunt, or other form of drainage to stop the hydrocephalus. Again, she would likely live, but in this case not for long. It’s impossible to say how long it would take, but eventually the pressure would destroy the rest of her brain, and she would die. It would be a short and probably painful life, and cruel to both her and those of us who care about her.
Which left us with the third choice. We could go Colorado or New Mexico, and we could terminate the pregnancy. It had to be done before 34 weeks legally, and even then we had to provide proof that this is a case of medical necessity. But it would be quick, for her, just an injection to stop her heart. For us it would be a four day process, starting with the injection, followed by two days of gradually opening the cervix, and ending with basically a combination of delivering (though with very limited pain relief) and a D&C. Of the three choices, it was the one that would hardest on us, at least emotionally. There would be no chance to hold her, or to ever see her alive other than on an ultrasound screen. But of the three choices, it was the one that would be best for her. It would give her the grace of a quick death, instead of a protracted, painful one, or a life that offered her nothing at all.
It also turned out that the whole thing is more complicated than expected. Growing up (in a fundamentalist Christian home, though I’ve since moved away from that), I always had this thought that there were women out there getting late term abortions all the time, for no good reason. Turns out, as I mentioned, you have to provide (fairly extensive) proof that it’s medically warranted. It’s also far more expensive than we expected. The price we were given, which was based on her size, was $25,000, and, unlike most medical procedures where you simply deal with the bill later, it must be paid up front. Thankfully for us, our insurance would cover it, but the standard procedure is for us to pay and then send the bill to insurance for reimbursement. And since there are no providers “in network” that do the procedure, our insurance company would be obligated to reimburse us for only whatever they thought reasonable, and leave us with the rest. In this case, the initial amount they approved had them paying a grand total of $700 of the $25,000 bill. But we’re fortunate to have very good insurance, and my husband was able to work with them to get an exemption (to basically count this doctor as in network), which left us only responsible for our deductible. They also told us that we’ve set a precedent for this type of situation, so if someone else with our insurance faces the same thing, they won’t have to deal with the hours on the phone and tons of paperwork to get the out-of-network exemption. Unfortunately, even with the extra couple of weeks it took, there wasn’t time to get them to approve paying it up front, so we were still forced to come up with the money ourselves.
I don’t know what we’d have done if our insurance didn’t cover it. There is an organization (a charity of some sort, I assume) that helps with the costs in situations like ours, but it’s based on income. We make enough that I doubt they’d be able to do much for us, but that doesn’t mean we have $25,000 just sitting around. And we had to deal with our travel costs no matter what, not to mention the sick leave my husband had to use for the week that were gone. (Again, we were lucky in that his company gave him an extra 40 hours of sick leave for it, but many people wouldn’t have that available.) It makes me really, really angry that it was so hard. This situation was incredibly difficult already, and added to that was a ton of financial worries, travel, and stress, so that we could go to an office where every single employee is risking their life every day just by doing their job and helping people like us who are facing an impossible choice. We’re not just some flighty kids that made a baby and then decided that maybe we don’t want to deal with it after all. We didn’t make this decision because we were unwilling to raise a child with special needs and wanted to just scrap this attempt and try again. This was a baby that was badly wanted, but whose medical situation was so dire that the only kindness we could offer her was to let her go as quickly and painlessly as possible. We shouldn’t have had to go through so much to do something that’s already the hardest thing we’ve ever had to do. And the people who helped us should be seen as heroes, not murderers.
The two weeks between making the decision to terminate and actually doing it were hard, but not terrible. In some ways it was good to have that time to say goodbye, and not feel rushed. My husband spent plenty of time with me, including taking some extra time off work. Though at that point it hadn’t really sunk in. There were some tears when we first found out, but not really after. That came when we had to actually say goodbye, and go through with it, and continue on without her. Thankfully my husband didn’t try to pretend she was already gone. He still wanted to feel her move and talked about her. Part of me did want to put on baggy clothes and pretend I was just fat, but it wouldn’t have been right. We had the whole rest of our lives to mourn her, but we only had those last couple of weeks to be with her.
We did have maternity photos done. We wouldn’t have, but my amazing sister-in-law put the whole thing together. They have a cousin who lost a baby under similar circumstances, and she told my sister-in-law that we would regret it if we didn’t do it. So she called around and found us a photographer willing to meet us last minute (on a Sunday, no less), and a hair stylist who touched up my highlights and did my hair, and even a makeup person. She also paid for the photographer (the other two worked for free for us, though I tipped them). It was kind of hard to do, and I don’t exactly expect I’ll want to keep the pictures displayed to look at all the time, but I’m really glad we did it. This might be our only pregnancy (we may pursue adoption, though we’re not really thinking that far ahead right now), and I think the cousin is right that we would have regretted not having the pictures as a sort of remembrance.
We’ve boxed up all of her things and put them in the attic. We are keeping pretty much everything for a future baby. To us they’re for our baby (and we will have one someday, one way or another), not for her specifically. I did choose not to use any as props in the maternity photos for that reason. That would have made them actually hers. The only exception, I think, will be the blanket my cousin made for her. For whatever reason, that feels like it should be kept special. I’ll have that, and I’ll be getting some sort of Christmas ornament as well. I never did get one for the miscarriages (I might yet), but she needs one.
My husband’s also getting me a ring with her birthstone, to wear with my wedding and engagement rings. It’s what I’d planned for any babies we had, this will just be in remembrance instead of just acknowledgement. We’re going to go with ruby, the July birthstone. She was due in September, then planned for August, and eventually July, so it’s hard to say which one is really appropriate. But the last date we were planning for her birthday was July 27th, and that’s the day I want to commemorate. September, I feel like, fails to acknowledge everything we went through, and in August we just had a general idea, not a specific date. I don’t want the day we terminated to be the one we choose to remember either, so as far as I’m concerned her birthday is July 27th.
So for now it’s just a matter of waiting for time to do its job, helping us to heal emotionally and (in my case) physically. It’s very slowly starting to feel a little easier, and while I’m sure there will always be bad days, I expect they’ll come fewer and farther between. We’ll be sad, but we’ll move on, and we won’t forget, but neither will it seem like such a huge, all-encompassing thing standing in our way forever. I hope so anyway.
The choices that we were forced to make will be controversial, but I’m not going to try to hide them either. It’s not fair for us to have to live with this as some big secret, nor do I think it’s something shameful or wrong that merits secrecy. And I’ve blogged all this so far in case someone else who is going through something similar finds it, and finds some comfort in it, and some reassurance that I, at least, understand what they’re going through, and there is no judgement here. I’m not ashamed of what we did. I don’t have doubts that it was the right thing to do. It wasn’t a selfish choice. If I was being selfish I’d have carried her to term, and had those days or weeks or months with her. Or maybe even have delivered early and had her get the shunt, and risked her never having any sort of life for the sake of that maybe 1% chance that she would be, not okay, but not quite as bad as the worst case. I didn’t want to give up the only time I could have with her. But our job as parents was to do what was best for her, even when it meant letting her go. And I’m not going to apologize for that, or try to hide it.
Her name is Katlyn River.