The past couple weeks have felt like a nightmare. Sometime soon, someone is going to shake me awake, and I’m going to tell them all about the worst dream of my life, because this can’t be real life.
I have to imagine that this is the worst pain a parent or soon-to-be parent can face. Hearing and dealing with a child’s diagnosis. I would give anything to take the hydro away from her and have it myself.
I went in for a routine 20 week ultrasound on November 4th. There my husband and I saw our baby from head to toe, and she confirmed it was a girl. I had joyous tears streaming down my face, and was so elated. We immediately told all family members and announced the news online.
I got a voicemail the following Tuesday, November 8th, that a nurse wanted to go over the ultrasound findings with me over the phone. I figured that she wanted to discuss my bicornuate (heart-shaped uterus) because that was noticed during an 11 week ultrasound. There was no way it could be anything major.
I remember the phone call vividly. A friend told me a joke when she answered the phone, so I had to regain my composure. I was in an upbeat mood. It’s crazy how fast life can change, and the wind can get knocked from your lungs. She told me that the radiologist had some concerns in that he noticed my baby girl’s ventricles measured 2 centimeters, that they should both be under 1, and that there’s fluid building up on her brain. She said that they didn’t have the technology or the specialists at the practice I was currently at, so she wanted to refer me someplace else. I left the phone call in utter shock. I had no idea a condition like this even existed.
I got the phone call from the specialist the following day, and the receptionist told me that it was wise to make an appointment as soon as possible, and that the earliest they could see me was November 17th. Like any worried parent or soon-to-be parent, I spent the following week researching non-stop about hydrocephalus and ventriculotomy. I learned about shunts, infection rates, and that it’s a permanent condition. That if my baby has it, that surgery will more than likely be needed. Even though I had all these facts and fears, I was praying that the original ultrasound was wrong. That this had to be a misdiagnosis.
The 30 minute drive up to the specialists in Tacoma, WA was nerve-wracking to say the least. I could hardly eat breakfast, and Joshua was trying to calm my nerves. When the ultrasound tech started her scan, she immediately started with her head, and that’s when the waterfalls started. I couldn’t help but cry during the entire exam. When she finished, she told me that she was going to grab the doctor. When the doctor arrived, she had a confused look on her face. I immediately asked, “do you not see it?!” Hoping that it was in fact a misdiagnosis, and that the whole trip was pointless, but there she confirmed that my girl had hydrocephalus. That one ventricle was measuring 23 mm, and the other was at 21 mm. She also pointed out that her body was in the 6th percentile, and her head was in the 97th. Her body isn’t growing as fast as they’d like, because the umbilical cord from the placenta is placed low. They also noticed a smaller than normal femur bone. Because of all these “soft markers” she was concerned that she might have Down syndrome.
After the appointment with the specialist, we met with a genetic counselor. There, we learned all about the genetics that make up a baby, and the possibilities of her having Down syndrome. We left the appointment with an amnio scheduled for the following day. My husband and I were both concerned about the risk for miscarriage, so we spent the evening talking and deciding on if we wanted to go through with it or not. Eventually, we decided that the need to know outweighed the possible small risk. Overall, the amnio test wasn’t that bad. It was hardly painful, and extremely quick. I spent the rest of my weekend resting at home.
So now, I’m in the process of waiting, and I’m not a very patient person. I’m waiting to hear back about the amnio results. I’m also waiting for my future ultrasound on December 9th. I’m hoping to God the ventricles are either the same or smaller, and that the fluid in her brain is either the same or reduced. I’m also interested in having a fetal MRI done soon.
Overall, this is the hardest thing I’ve ever dealt with, and I don’t know when it’s going to get easier. It’s hard to listen to everybody’s advice to stay positive and to enjoy my pregnancy. It’s gotten to the point where I’ve announced to everyone that I don’t want their advice unless I ask for it. I can’t keep a fake smile on my face, so I feel like I’m making everybody around me uncomfortable with this dark cloud over me. And to be honest, I’m super jealous of happy parents and parents-to-be. I want to shake them by the shoulders and say, “You have NO IDEA what I’m going through, you have no idea how my world has turned upside down!”