Trusting My Instincts

Posted on Posted in Omphalocele, Stories, Trisomy 13 (Patau syndrome)

By J. C.

t-13-twins
The odds had been against us from the beginning of this pregnancy. We just couldn’t take the risk.

I’ve started to write this story about five times but never made it more than a few sentences. Fortunately my genetic counselor gave me the link to this web site, a godsend, when we got the results from the amniocentesis. I’ve navigated through the site many times since.

My family, including our wonderful two-year-old son, were on vacation in Florida. I had suspected that I may be pregnant, but wasn’t sure. The hormones were flaring and I was starving on the drive there, but still, I questioned myself. I took the pregnancy test in the bathroom of our vacation condo and got to announce to my whole family that we were expecting our second child. It was such a happy time.

A few of weeks later when we were back at home, I told my husband that the pregnancy just didn’t feel right. I thought it was possibly I could miscarry. I had never thought things like this during my pregnancy with my son. But this pregnancy felt different. I was extremely nauseated all of the time, and I never wanted to eat which is very unlike me. But, I just tried to chalk all that up to the pregnancy.

At my first appointment the doctor thought I was further along than I believed because my uterus was large. As a result I was scheduled for an ultrasound. Naturally, my husband came with me for the ultrasound appointment and we found out we were having twins! We were excited, but also pretty scared. After the initial shock wore off, we called our family and friends to share the wonderful news. This had to be the reason that the pregnancy felt so different to me, so I was somewhat relieved. In retrospect, I should have trusted my instincts.

At the next appointment we got to hear the heartbeats again and my doctor asked me if we wanted to undergo the initial genetic tests. With my son, we had opted to forgo testing, and had planned to do the same with this pregnancy. But considering my age and twin pregnancies being classified as high-risk, I changed my in the doctor’s office and chose to have testing for this pregnancy.

I never worried about how we’d take care of twins or whether it would be overwhelming. My main concern was that they would be healthy. I teach students with autism and have also taught students with moderate to severe disabilities. I understand—more than some—what having a child with a significant disability is like. This is not to say I have any idea what their families go through day-to-day, but I have experienced many heartfelt conversations with these families and I know it can be difficult.

My next ultrasound took place at 18 weeks. This was the day our lives were forever changed. The night before I’d laid in bed thinking what if this is the last normal day of my life? Again, I should have trusted my instincts.

We wanted to find out the genders at the ultrasound. They checked Baby A first. It was a boy! He appeared strong and healthy, with normal measurements and a good, steady heartbeat. Looking at Baby B the expression on technician’s face changed. She couldn’t discern the gender. I could see on the ultrasound screen that Baby B was smaller, but ultrasounds are hard for me to interpret. The technician continued to study Baby B.

I asked her if something was wrong, but she wasn’t answering me. I insisted she tell me. She said, “It looks as if Baby B has a gastroschesis or omphalocele.”

I had never heard of those words. I found out later that those are both abnormalities associated with the stomach. Additionally, the tech said Baby B was smaller than Baby A, which could indicated a chromosomal anomaly. This word I knew very well, having taken many college courses that discussed various chromosomal anomalies.

We broke down. The pain of this news left us unable to think or feel. But, we had to go on an find out answers.

We immediately met with the doctor and asked him lots and lots of questions. We asked about selective reduction and he was not helpful at all. We scheduled a level II ultrasound with a specialist the next day.

We went home, cried and cried and cried, called our parents and spent the entire night reading about omphaloceles and gastroschesis on the Internet. It was very discouraging.

The next day we walked into the hospital exhausted and saddened. The nurse started the ultrasound and gave us the same information about Baby A, and then started to look at Baby B. I of course began asking questions and she gave very guarded, but hopeful, answers. The doctor came in and spent about 45 minutes looking at Baby B. He told us he didn’t see anything alarming about Baby B, that she was smaller, but it wasn’t twin-to-twin transfusion syndrome. When I specifically asked about her stomach, he said he saw nothing unusual. In hindsight, my husband and I both could see the differences on this ultrasound between the two babies. We could even tell a difference in their brains.

This doctor also discouraged us from getting the amniocentesis done, warning that it could increase our risk of miscarriage and claiming we “really didn’t need it.” I am now convinced that this doctor did not tell us the truth. Yet, at the time, we were elated. Here he was, a medical professional, telling us what we longed to hear about the health of Baby B.

This was so far from what we thought we were going to hear that day. We again called our parents to share the wonderful news.

Despite the doctor’s strong suggestion that we skip the amnio, we met with a genetic counselor that same day and had it done. At the time, we told people we just had the amnio done for our peace of mind, but deep down, we weren’t convinced that the second doctor hadn’t been forthcoming with us. We still thought something could be wrong.

The genetic counselor called with the amnio results. She was so kind, and so sweet. She confirmed that baby A was a boy and was genetically normal. But Baby B had Trisomy 13. I will never forget how she sounded, how I felt, or any of that conversation.

I cried and said, “What do I do?” I felt like a lost child. She told me to call my husband, who was on his way home, and to call her back. She also asked me if I wanted to know the gender, I said  no. It wasn’t until months later when I decided I needed to know and called her, she sent me the report. Baby B was a girl.

The next two days were indescribable. The genetic counselor called us and talked to us about our choices. It was possible that Baby B would not live through the pregnancy or after birth. Carrying her to term wasn’t an option for me. I just couldn’t do it. Trisomy 13 as many of you know, brings many, many significant medical and cognitive issues.

The doctor who had done the first ultrasound called me the next day. He was nice. We discussed the options, one being selective reduction by a doctor in New York City. Due to a religious holiday, we would need to fly the next day. We were more than willing to do this. We called the doctor in NYC and he gave us lots of information about the procedure. He said the odds of going into labor early did not increase with this procedure.

Afterwards, my husband and I had a conversation that changed our decision. We discussed at length what if Baby A was born with disabilities after all of this? We wanted to have a sibling for our son, and what if we were giving him a responsibility for a lifetime? Also, the odds had been against us from the beginning of this pregnancy, we just couldn’t take the risk. At this point I still had only gained 6 or 7 lbs which as significantly less than I should have this far along in a twin pregnancy. This time I decided to trust my instincts. We decided together to end the pregnancy.

It was, and still is and I believe will always be the most horrific decision we will ever have to make. I’m not going to write of the details of the procedure other than to share that the doctor who performed the procedure was a wonderful, gentle, professional man. I think of how different this awful experience could have been if he’d been a different kind of person. We were so thankful for his kindness.

As life changing as this has been, I don’t feel like why us? We get through each day by reminding ourselves that we have a wonderful family of three. I can’t imagine how I would have dealt with without my husband. He is what kept me going.

Our son is now four and so wonderful. I don’t think he remembers me being pregnant. After the procedure, we told him the babies were gone and in heaven. He had just seen my good friends new twin boys the day before in her van and asked me “Are they in Kelly’s van?” The innocence of children…

We didn’t have any type of a ceremony for our babies. I have a very special box with their ultrasounds, many cards from family and friends, and a letter to them from me. I look at it often and wonder if I’ll ever need to look at it less.

Not a day, actually an hour, goes by that I don’t think of my babies. I know we did what was best for our family, but I still wonder what could have been. We loved them so much. I like to think that if something was wrong with Baby A as well, that Baby B gave us the strength to let him go, and in some way saved him from a painful life. I have learned, particularly when my son is concerned, I always trust my instincts. Moms know.

Thank you so much for this site…it’s a life saver.

 

photo credit: 100-0019_IMG via photopin (license)