I want to talk a bit about the choice we made to end Cate’s life. It’s impossible to convey the nuances of such a choice in a single 800-word article, which is really the only details I’ve given publicly so far. This is going to get a bit technical, but maybe it will help you see how much information we had to take in in such a short amount of time.
First, I want to point out that it’s always hard for me to say or type those words, “end Cate’s life,” or anything similar. But don’t take that as regret. It’s hard because it will always be one of the hardest decisions either Peter or I will ever have to make. It broke our hearts, and of course it made us sad to do it.
But that doesn’t mean it was the wrong thing.
We had 12 days between Cate’s initial diagnosis and our termination procedure. Let that sink in a bit. We were overseas on our trip to conceive the girls for longer than we had to make a decision.
The law in Texas states that abortions cannot be performed after 22 weeks* (20 weeks gestation plus two weeks prior to fertilization — this is the typical way of calculating pregnancy weeks). We received the initial diagnosis at 20 weeks and 1 day, and we had to make a decision and have the procedure, if that was our decision, before the end of the day that I was 21 weeks and 6 days.
- Encephalocele (Originally thought to be closed; found to be open as far as her skull was concerned, but there was a thin membrane covering the outside of the cyst. This membrane was allowing proteins from inside her skull to get into her amniotic fluid.)
- Small head size (Two weeks behind at our 20-week scan, but it didn’t grow in the following week and a half, so it was eventually classified as microcephaly.)
- Severely underdeveloped cerebellum (Found by the third specialist we saw; confirmed when we revisited our second specialist.)
- Underdeveloped prefrontal cortex (Also found by the third specialist we saw; confirmed when we revisited our second specialist.)
- Severe cleft lip and palate (First scan couldn’t confirm palate; by the third specialist, we had that confirmed and knew it was about 9mm wide.)
So let’s break all of that down a bit more. Peter and I spent many sleepless nights and days researching all of these issues and their implications, as well as the implications all of this had on Olivia.
The brain issues were obviously the most severe for Cate directly. Due to how pressure works, her brain was being pulled back and into the encephalocele. It hadn’t moved too much in that direction, but our doctors could tell it was being pulled back, and we all know the brain is a very sensitive organ that can’t take too much pulling and pushing like that. The ventricles were also elongating and on their way to developing into ventriculomegaly (also know as hydrocephalus, or a fluid build-up on the brain).
The microcephaly meant that her brain didn’t have the room to properly develop. It also suggests neurological issues even down to the genetic level. The cerebellum is in charge of voluntary motor functions, while the prefrontal cortex is in charge of executive functions (attention control, inhibition control, working memory, reasoning, problem solving, and more). Neither of these regions was developing properly, which indicated severe cognitive problems.
The cleft, though the least of our problems, indicated to our doctors what one called “severe disorganization of the brain” when combined with the other issues they were seeing. That phrase – “severe disorganization” – will stick with me for the rest of my life.
On top of that, the cleft posed a problem for Olivia. How so? In the womb, babies swallow their amniotic fluid regularly. This is their breathing practice and also gives the kidneys some practice, too, since they then urinate the fluid back out. This cycle is key in regulating the size of the amniotic sac. Cate’s cleft made it impossible for her to actually swallow her fluid — she had a large opening in her face, essentially, so the fluid wouldn’t stay in her mouth long enough for her to swallow it. This caused her sac to grow significantly, even just in those 12 days. And that meant Olivia didn’t have the room she needed to grow.
We had options. Obviously. No one goaded us into terminating. The choice was always ours. We had to choose the least shitty option from a line-up of really shitty options.
1. Carry the girls as long as I could and immediately send Cate off for surgery after surgery after surgery that she likely wouldn’t survive. All three of our doctors put her chances at surviving those early surgeries at “slim to none.” With an open encephalocele, she was also at high risk for brain infections during delivery and the first surgery.
2. Carry the girls as long as I could and immediately begin palliative care for Cate. She would stay in the hospital and be kept as comfortable as possible, but no life-saving measures would be made. Though none of our doctors made firm recommendations either way, this seemed to be the way they leaned if we chose to carry to term because of the extreme risk all the surgeries posed to an already compromised Cate.
Options 1 and 2 also meant playing a game of chicken with Olivia. If the fluid in her sac dropped below a certain measurement, she would be in danger and need to be delivered early. Our perfectly healthy baby would be at severe risk strictly because she was premature. Underdeveloped lungs are the biggest concern, of course, but also infection. For those thinking, “But this is all a maybe,” you’re right. But Olivia’s fluid was shrinking fast and was getting close to the cut-off level already, when I wasn’t even 22 weeks along, because Cate’s sac wouldn’t stop growing.
3. Terminate Cate’s part of the pregnancy. We would use the most humane termination method (injection of potassium chloride into her heart), and she would stay put until either my body reabsorbed her or I delivered both of them. The doctor would inject numbing medication into my stomach, which would provide numbing to Cate, too, so the injection would feel like nothing worse than a blood draw, and her heart would stop quickly.
Not one of these was a good option. In one, we watch our child suffer through many surgeries in the hopes that she might have minimal brain function. In another, we would keep her as comfortable as possible while she died in front of us. And in the last one, we let someone take her life in order to end her suffering as soon as possible AND save our other daughter from possible danger.
This wasn’t a matter of choosing the best option. It was choosing the least shitty option. It was choosing the option that spared both of our girls from danger and suffering.
And in the end, that’s exactly what we did. We saved one daughter from certain pain, suffering, and death. And we saved another from a variety of potential complications on her life. We made a compassionate choice that we do not regret for one millisecond.
*The law makes an exception for health of the mother, rape, or incest. Third trimester abortions also have an exception for “severe and irreversible abnormality,” but in the eyes of the law, since our doctors said they could gather a team together and “do what they could to keep her alive,” we wouldn’t have had a leg to stand on there. In our eyes, alive is so very different from having a life.