My partner and I were so excited and surprised to find out we were expecting our first child in September 2021. We had a relatively smooth first trimester, and elected to do NIPT testing which revealed we were having a girl and our daughter had a 50/50 chance of having Turner Syndrome (monosomy x). From that moment, we were determined to learn all that we could about Turner Syndrome and prepare for our child. We were told that she probably didn’t have it because up to that point her ultrasounds had been good. We decided to move forward with an amniocentesis, and were seen at 16 weeks. It was at this ultrasound we first learned our sweet Gwendolyn had a large cystic hygroma, hydrops, and all of her long bones were measuring short. These are all symptoms of Turner Syndrome. We chose not to move forward with the amnio because we didn’t want to increase risk of harm to Gwen, and we were determined to make it to have a living baby.
Fast forward to 21 weeks, and we had Gwen’s anatomy scan and fetal echocardiogram, and we were told this would be a two hour appointment. Pretty quickly into the ultrasound, it was determined that Gwen’s condition had worsened significantly. Gwen’s cystic hygroma had grown to include her head, neck, back, and arms. Gwen’s hydrops around her heart and abdomen had increased in size and due to her positioning, the tech couldn’t complete the scan in its entirety. About 15 minutes into this, the tech stopped the scan and said she was going to get the doctor. I will never forget this horrendous interaction with this doctor. They came into our room and said due to low fluid around Gwen (she was absorbing all of the amniotic fluid) and her large cystic hygroma, they did not think additional time would benefit the scan, and so it was ended. Essentially, the doctor proceeded to tell us everything we’d heard before and could tell us nothing hopeful about our beloved daughter.
The next week we had our first appointment with our MFM specialist. During that appointment we were asked if we were hoping Gwen would pass on her own, and I instantly said yes. It was evident after our last scan we would not be bringing Gwen home. We had been so determined not to terminate! We wanted our daughter. During this appointment, after exploring the risks, we decided the best thing we could do for our baby was TFMR. This gut-wrenching decision was made with nothing but love and a desire to prevent our daughter from suffering.
On 2/7/2022, we arrived at the hospital for the procedure knowing we would be admitted after to start induction. On 2/8/2022 Gwendolyn Faith was born.
We were able to spend about 12 hours with Gwen. Leaving the hospital without her almost killed me. Thankfully, the funeral home we used quickly had her ashes to us days later.
Unlike a lot of people I’ve met on this journey, we opted out of additional genetic testing and an autopsy—to us we already knew what was happening with Gwen. We felt no reason to continue testing when the outcome wouldn’t change.
In the time since losing Gwen, life has honestly been difficult. My milk came in, and that was another hurdle to overcome. It dried up in about a week, but ultimately was a reminder she wasn’t home. All of the clothes and baby items we purchased sit untouched. We found a support group locally, and I’ve attended several group sessions online. I also go to individual therapy.
My goal in writing this, is that those going through this don’t feel alone. I felt so isolated because I don’t know anyone else who’s been through this process. Making the “choice” for termination never felt like a choice. We simply wanted to promise our daughter she would never know suffering. We will forever be grateful for the time we had with our beautiful, perfect child.