Turner Syndrome; Our Story of Loss

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With our first child we got pregnant on birth control. Yep, I took it everyday at the same time but it happened to us- we were the 1% you always hear about. When she was just over 1 I told my husband I was ready to start trying for number 2. We were excited to begin the process of trying.

Well after one try it happened, again we were ecstatic. It felt so good to get pregnant so quickly and easily, almost too easy. During that time a close friend died of health complications and my mom was diagnosed with cardiomyopathy and her heart function was 20%. I felt selfish for being so excited and so happy that we were pregnant again, it was a weird time.

In the meantime my husband I bought our forever home- our dream house, with the pool and white fence. Everything was good. Life was perfect. But that’s the funny thing about life, I started having night sweats and dropping weight without trying – we found out I had Lymphoma in my lymph nodes in my neck. With the help of some incredible surgeons they were able to get it all out safely and without it spreading and leaving me with the smallest of scars. My oncologist gave us the go ahead to try for number 3.

Well, I was silly and thought, this will be no big thing, this will be easy as my other pregnancies were. I was so wrong, it’s actually funny how wrong I was. It took us 15 months to get pregnant, which felt like a lifetime to actually get pregnant. But once we got pregnant, I was elated. We told the kids right away and, being 5 and 3, they too were excited but slightly disappointed when they learned their baby wasn’t coming right away.

There was some spotting in the beginning and since I’m RH- negative, I was watched closely and they found a very small hematoma. It wasn’t affecting me or the baby and it was healing on its own – my worries were melting away. I fell into a false sense of security. Since this baby was going to be our last I opted to get the blood test to find out the sex and do the rest of the genetic testing. I wasn’t worried about it at all.

All until one Tuesday when my OB’s nurse called to tell us our daughter had Turner’s Syndrome. I was so excited to have another little girl – my daughter wanted a little sister and so did my son, all our wishes had been answered. I didn’t know what Turner Syndrome was, I had never heard of it and the nurse told me she made an appointment for both my husband and I to meet with the geneticist for the next day, which we would also have an ultrasound. I was happy my husband would see his little girl. The one we wanted so badly. The one we named. Madeleine Eleanor Howe, or “MEH” as I joked.

We spent an hour and a half learning about Turner Syndrome. The geneticist was so kind and answered all my questions, the 30 questions I walked in with and then more. She held our hands, we talked about potential specialists – I told her the ones friends in the medical profession had referred us to. I was focused on getting her here, carrying her to term – never did it cross my mind she wouldn’t make it.

When we had our ultrasound she was so small, and she wasn’t moving but I thought she was napping and wasn’t worried, when the ultrasound tech said, “I’m so sorry there is no heartbeat today.” My world, my husbands world came crashing down in a sterile room, with an ultra sound tech behind a plastic barrier – with our little girl on a large tv screen in front of us, everything changed. My heart physically hurt, tears were rolling down my hot cheeks before I could even mentally process the words she just said. My response was, “Oh, ok, then.”

I sat up and my husband was holding my hand, he swallowed deeply and said “it’s going to be ok, I love you.” and all I could say was, “are you ok?” I knew he wasn’t ok, but I didn’t know what else to say, or do. I wanted to run out of there and scream, but knew that wasn’t an option. The geneticist came back in and said she called my OBs office and someone would call me back with further instructions. Wednesday, July 15th our world came crashing down. How would we tell our kids? How would we tell our friends and family, how would we move on? All these questions and more. The ride home we were quiet.

My OB called, she was so kind and heartfelt – she arranged for my D&C, talked me thru it all and held my hand. On our 9th anniversary we said goodbye to our little girl. We didn’t go out to dinner or have a tasty dessert or exchange gifts or a card. We were just together — we talked, we cried, and I’m sure we will have many more emotions and feelings and questions.

Turner Syndrome is very rare, so rare about 200,000 women suffer from it, some go on to live normal and healthy lives, others struggle with depth perception and fine motor skills, heart conditions or kidney problems. Most women who have Turner Syndrome are shorter and struggle with puberty which leads to fertility issues. The only reason why I haven’t fallen apart completely is because from the moment I learned, I asked if she was in pain. All my research, all the doctors has told me no, and that has brought such comfort to me and my husband knowing she wasn’t in pain. 99% of pregnancies with Turner Syndrome end in miscarriage, usually in the first trimester. It’s cruel and it’s unfair, and now I am like other mothers who say I have 2 living children and 1 that has died.

“Now I live in a dream where I am
Holding your little hands
I never got to meet you, my best friend”

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