Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
This is her story:
My name is Gen and I’ve always loved children. I love being their entertainer, their caregiver, their snuggle buddy. Having one of my own was on my bucket list but having one ON my own wasn’t.
I was 28 when I met Sam, the man who was to be my husband. In less than 4 years we were ready to give parenthood a try. I went off the pill and we were as busy as bunnies. After 8 months without results, I consulted a gynecologist. He took a history, did a pelvic exam and recommended that Sam provide a sample for analysis.
The results were mixed. I appeared healthy. Sam’s sperm count was low and had low motility. But there was a supplement that showed promise.
3 months later Sam’s sample didn’t show any improvement. We consulted a fertility specialist. This time, the same history the same pelvic exam and the same semen analysis. The only way we would get pregnant would be with IVF with ICSI, that is, in vitro with intracytoplasmic sperm injection.
No, we really didn’t know what we were getting into. And no, we hadn’t talked about adoption.
Next step was to start on birth control and then the follicle stimulating hormones. The process involves needles. Lots of needles. And did I mention the hormones? Lots of hormones.
To cut to the chase, the first cycle failed. The second failed and third and fourth cycles never made it to the transfer stage. My body did not respond well to the hormones. I suffered months of migraines and my uterine lining refused to thicken with the treatment. I took a month off. I tried acupuncture, took a few more yoga classes. I relaxed.
August came and the migraines were far enough behind me that I was willing to try another cycle. My uterine lining barely responded to the hormones but there was just enough there for the doctor to approve proceeding with the cycle.
And we were successful. We did it. Nine months later, Chloe made her appearance.
But we weren’t satisfied. Chloe was a delight. Being a mom was the most wonderful experience of my life and I couldn’t wait to try again. 10 months after her birth, we went back to our fertility doctor and asked for another. We had several embryos cryopreserved.
We had been through the process we knew what we were getting ourselves into.
I weened Chloe and started the hormones again. Fortunately my body responded. My uterine lining thickened nicely and we scheduled the transfer.
We took our first pregnancy test and wow, we were pregnant. That was easy, right?
Wrong. Sadly it was a chemical pregnancy.
We tried again. This time nothing.
We had one embryo left. We tried again and again.
Finally our fertility doctor suggested testing me for hydrosalpinx, a blocked and fluid filled fallopian tube. Turns out this is a pretty standard test for women having difficulty conceiving a child naturally. And I had it.
We went through a procedure to correct the situation, essentially a sterilization. Yes, it was surreal.
By now we had used all of our frozen embryos. We were going to have to go through a fresh cycle again. Great, more hormones and a LOT more needles.
We completed the cycle, the transfer, the pregnancy tests. We were pregnant, finally. And then we weren’t.
Our fertility clinic provided ultrasounds for the first 8 weeks of the pregnancy. The initial ultrasound showed one live embryo. The second ultrasound showed a slow heartbeat, but a heartbeat nonetheless. The third showed progress, not excited, not reassuring but enough to qualify as growth. I was released and sent on to my regular OB.
At 9 weeks, I went to my OB, without Sam, for my first appointment. She did an ultrasound and there was no heartbeat. She checked a few times but nothing. I left her office with an appointment for a D&C.
I was in shock when I left, I was in shock when I had the procedure and I was in shock for at least another 2 weeks. I didn’t cry, I didn’t talk about it, I felt nothing.
This effort to have another child has been harder than trying to have the first….because I know what I’m missing.
And yet, I’m still trying.