Birth Story of a Turner’s Syndrome baby

In October 2007 I was in England studying for my Master’s degree. I was visiting the Bronte family parsonage one Saturday. I love Jane Eyre, amazing book in my opinion. The one thing I remember the most from that outing was that there where fall colored leaves on the ground. I hadn’t experienced fall in five years. I was on the way home on the train and stopped in one of the stores at the train station and bought a pregnancy test. It was the cheapest one they had. My period was late and I had been feeling sick, but I chalked it up to the stress of moving to a new country and starting school. This was not out of the ordinary for me. Got home that night and used the pregnancy test. POSITIVE.  Two very distinct pink lines. Waves of fear washed over me as I suddenly tried to figure out what to do and who to tell.

By the time I found out I was pregnant, I was already 6 weeks and 1 day. At 10 weeks and 5 days I had some spotting during the night. I immediately called the doctor’s office in a complete panic. I was crying and terrified I was going to lose my baby. A few days later I went to the hospital and had a sonogram. There was a tiny beating heart there on the screen and everything looked fine. The spotting only happened that once. I calmed down and went about my daily life.

Than at 12 weeks and 6 days I got up in the late evening and had some bright red spotting. Once again the terror struck as I called the hospitals early pregnancy ward. They set me up with an appointment the next morning for another sonogram. The technician showed me the beating heart on the monitor and said everything looked good. She took some measurements and then told me to go back to the waiting room. I started to get nervous. Other people came and went. A nurse came out and told me that the doctor needed to talk to me but was with other patients and would be me with as soon as possible. So I waited and waited.  I was the last person in the waiting room when the doctor and a nurse came and got me. They took me into a private room and told me that the sonogram technician took some measurements and the thickness at the back of my baby’s neck was too thick. This was a marker for Down’s Syndrome.  And that the bleeding was just my body’s way of getting rid of this mess.  I was given an appointment with a doctor that dealt with this kind of stuff. The doctor was rude, rigid, and unfeeling. I never did see her again.

My next appointment was with Dr. Glanville who became my high-risk OB-GYN. She did a sonogram and confirmed that the back of my baby’s neck was too thick. She told me all the possibilities of what that could mean. She was honest and straightforward with me. She told me the good and the bad. I had time to think and read. I needed to know what was going on with my baby and decided to have an amniocentesis. At 17 weeks and 5 days I had the amniocentesis. It was a Wednesday and I took the nest two days off from work.  At 18 weeks my doctor called and told me my baby has Turner’s Syndrome. I breathed a sigh of relief at the phone call because it was not one of the “bad” diagnoses. In my mind, because if I could make it to term, then she would be able to survive. It took a day or two for the reality of trying to stay pregnant hit me. Depending on which specialist I talked too, I wouldn’t be considered a viable pregnancy until somewhere between 26 and 30 weeks and I had a 99% chance of miscarriage before then. So for the next 12 weeks I focused on eating healthy, taking gentle walks every day, working, going to class, reading and writing for my classes, and going to all my doctor appointments. I also found out that my daughter had heart defects as well which occur about 30% of the time in Turner’s patients.

Somehow I made it through those 12 weeks. There were days when I would focus on just making it through the hour. During those 30 weeks, I told very few people I was pregnant. I also wore baggy clothes to make it look like I was putting on weight. I did tell the head of the Education department at school what was going on with me. Once I got to 30 weeks I started telling my teachers, my employers, and my advisor about my pregnancy.  I even started buying things I knew my daughter would need. Over the next few weeks I even started to enjoy being pregnant.

Then at 35 weeks and 5 days my doctor said that there were signs that my placenta might be failing. The blood flow through the umbilical artery (or vein) was way out of the normal range. My daughter had turned as well, from transverse to breech. With the signs pointing to a possible failing placenta, my doctor deemed it too dangerous to try and turn my daughter. At that appointment my doctor scheduled me to deliver at 37 weeks. She still gave me the option inducing me or a c-section. I had always wanted to have a natural vaginal delivery.  I had a little time to read and think, but decided the safest way to bring my daughter into the world was through a c-section. There were too many variables that could go wrong with a vaginal birth. After waiting so long to see if my daughter would even be full term, I wasn’t willing to take the risk.

Delivery was originally scheduled for May 30, 2008. After getting gowned up and waiting around for 6 hours, I didn’t deliver because there was no available bed in the Neonatal ICU. I came back on June 2 and at 2:20pm she was delivered via c-section. I got to see her for a few moments before she was taken to the NICU.  Just long enough for my dad to snap a couple of pictures. I was finally able to see and hold her for the first time the next day. That evening she was transferred to the other hospital to the cardiac unit. That night away from my daughter was the longest night of my life to date.

The next day, I was finally able to be transferred to the same hospital as my daughter. Life in the cardiac unit was much more relaxed that in the NICU. I was able to hold my daughter and help out with her. My milk finally came in and I was able to start pumping as well. The only support she needed was a feeding tube. It took a week for the doctors to get a complete idea of what was wrong with my daughter’s heart. She had aortic stenosis (her aortic value was too small) and aortic coarctation (a section of her aorta was too small). When she was 9 days old, her aortic value was opened up a little. Then at 16 days old, my daughter’s aorta was repaired. Once she recovered from that surgery and was breastfeeding, we were able to go home.

3 thoughts on “Birth Story of a Turner’s Syndrome baby”

  1. Hey
    So glad to hear that someone made to the end of a turners pregnancy I keep reading about people terminating turners foetuses and as much as I don’t judge, I am so glad that decision wasn’t made for me. I am an adult with turners and am living an amazing life and despite all my health complications I have achieved a lot. I am happily married and 16 weeks ago with the help of ivf I have given birth to a very healthy baby girl. Xx

  2. Hi I’m going through this right now, found out at my 12 week scan there was increased nuchal fluid on back of babies neck, went to another hospital next day to see a specialist who scaned me and wasvtold even more bad news that fluid was all round baby including lungs, me and my husband opted to have cvs test which we had a phone call 72 hours later saying our baby has Turners Syndrome. We have decided to let nature take its course in the hope we will meet our baby girl:). We have another scan coming up next monday 16 weeks see how baby is doing or if fluid has increased or decrased. Fingers crossed all is well I want my little miracle baby.
    It was nice to read a success story it has given me hope thank you. Xx

  3. Thank you for sharing your story. I’m currently 16w3d pregnant and just found out 3 days ago we are having a turner sindrome girl. Lots of mixed feelings, must the biggest of all is our love for her.

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