Twenty-seven years ago today, I gave birth to a dead baby girl. She had Klippel-Trenauny-Weber syndrome. She was the first person to be diagnosed in utero.
We found out because we saw a puffy foot on the ultra-sound. One should not have puffy limbs while floating in a pool, so we were sent to have an amniocentesis. The geneticist was a brilliant fellow with the social skills of Milton Waddams from the movie Office Space.
He told us that the amnio could only spot about 15,000 birth defects. He then pulled out a tome larger than any book I’d ever seen called The Encyclopedia of Birth Defects and set it between us on his desk. I had to move so I could see around it to keep facing him.
He had a list of various things that could be wrong with our baby. At the bottom, the most unlikely of his list, was this strange three-named hyphenated uber-rare genetic disorder. After learning about our history with hemangiomas, he moved that weird word to the top of his list. (I’ve read since then that family history shouldn’t matter, but I’ve also learned in the rare diseases and disorders world, people really don’t know until they know for absolute certain. Any times the words “may”, “should”, “could”, “usually”, “sometimes,”or “often” are used, doctors and scientists are taking a shot and doing the best they can.)
There was no internet. This was a strange and unusual rare disease and most doctors had never heard of it almost none studied it. I began investigating any where I could. I read the sheets the geneticist gave me. I worked at a hospital, so I got permission to use their physician’s reference library. I found the one doctor in the United States who had written a recent paper on the subject. I learned that like many conditions, the consequences could be minimal to grotesquely grave. I also learned that if she had this showing up so early in her formation, that she would be on the grotesquely grave end of that spectrum.
There are lots of details, but we were certain that we would have to at least amputate her leg once she was born and old enough to handle the surgery. We also knew that because of the condition her leg would be huge in comparison with her body, her bones would be twisted, and her nerve endings stretched so that she would have intractable pain.
Because she was developing so early with this three-headed hydra that there would probably be bloody tumors in some internal organ(s) and that the tumors usually grew to meet each other. With that said, one cannot amputate a person’s trunk.
We were so excited to have a baby girl. We had a darling son who we never believed we could love as we did, and this seemed the cherry to our happy little family. My husband worked contract for General Dynamics at NASA in Houston. I worked as a chaplain at a hospital in Austin. I had benefits. He did not.
There was no “health care market”. You had insurance through work or you didn’t. (If you were very wealthy or very poor there were options, but both were out of reach for us.) Once you had a pre-existing condition you were not going to get health insurance to cover that condition or anything associated with it if you left the health insurance coverage you had when the condition occurred.
I worked as a chaplain in a hospital. I knew of families impoverished by the healthcare demands of one member of the family. I watched as marriages crumbled, houses were lost, healthy children were sent to relatives, and parents struggle to avoid homelessness.
There was a decision to be made about ending this pregnancy, and that decision had to include the responsibilities I had for both children not just the one growing inside of me.
We asked all of our friends what they would do. We talked and listened a lot, but really none of us knew. We were all in the throws of building new careers and new families. We were all thrilled with the little ones we had and if we wanted another were excited by that prospect.
We decided we were going to keep her and deal with whatever happened.
Then I had a dream. One morning, right before waking a voice filled my head saying, “What do the older mothers say?” I bolted up knowing I had to talk to mothers who had raised families. They had experienced everything, they were the ones who could offer real advice.
I called all the older mothers I knew. Both of our mothers had remained silent on advice when we had told them what was happening with us. I look back on this and marvel at their loving non-judgemental support. I talked to mothers who had been wealthy, mothers who had been poor, mothers who had been in happy marriages, mothers who had been in unhappy marriages, and mothers who had been single. I told them I needed to know what they would do if they were in my situation, knowing all they knew from raising children. Each mother said they would end the pregnancy. Each mother had two reasons why. 1. Intractable pain. 2. Care for the child in front of me.
We were surprised. We talked with our pastor. We called the doctor who had written the paper. We decided to end the pregnancy.
When I called the doctor to tell him. He scoffed at me. He said, “I can’t have any part of this. You want to end this just because you’re not going to have a ballerina baby.” I asked him if he had read anything the geneticist had given him. He had not. I described all that I had learned. He responded, “Well, taking your child to the doctor is a normal part of being a parent. Just this past weekend I had to take my 5 year old to the doctor for stitches when he fell off his bike.” He dismissed me and said if I wanted to talk about this anymore I needed to call the perinatologist who had performed the amniocintisis.
I called him. He told me he had never heard a more selfish mother. I asked him if he’d read anything the geneticist had given him. He said he hadn’t but that he knew the syndrome was just about strawberry birthmarks and made a remark about how Gorbachev had done alright. I talked about stretched nerve endings, varicosities in the kidneys, lungs, and liver, about huge twisted bones, and amputations. He said this is the problem with lay people read medical books. Finally he asked what I needed to calm myself down. Another ultra sound, I said. He made an appointment for the next day.
Two and a half or three weeks had passed. The tech came in to administer the ultra sound. There was a giant round image on the screen (these are the days before 3-D ultra sounds and everything looked like a weather pattern over Alaska until you adjusted your eyes.) “Is that her head?” “No. That’s her foot. This is her leg. There is no point in me continuing let me get Dr. X”
He came in right away with a grave expression. He pressed the wand to my belly, looked at the screen, and said, “Oh my god.” He turned to the tech and said, “Get Dr.Y” (his partner.) He partner came bounding in. He was tall with long blonde hair. He looked like Bjorn Bork. Saying nothing to me or my husband who were just living into the fact that our worst fears were being realized, he looked at the machine and said, “WOW!!! I’ve only seen one of these before and it had it all the way up to its armpits. At this rate this one will be like that two. This is amazing.”
I had to stop it all right there. “Ok, can ya’ll discuss this later? I know this is interesting to you, but it’s awful to us.”
My doctor snapped back, and said, “What can I do for you? I cannot perform this abortion. Actually no one in Austin does late term abortions you will need to go to Dallas or Houston”.
With my belly covered with goo, I said, “Dr. X, we are not shallow or cavalier people. We’ve been asking for help all along and you ignored us and discounted us. All I have been trying to do is be the best mother I can be.” He recommended a doctor in Dallas.
It was a two day affair. She was born dead. The doctor said his guess was that if she had gone to term she probably would have died from a heart attack at birth. Then again, if they’d seen her in distress they may have made an emergency delivery, put her on life support, and we would have had to start the horrible sometimes unsuccessful process of taking her off life support.
Being the best mother one can be sometimes means that you take on the pain of your children so they won’t have to bear it.