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Turner Syndrome – The Story of Ellie-Mae

turner syndrome ellie mae

Today, we have a guest post. This Mama, tragically lost her baby girl, Ellie-Mae, to Turner syndrome. She made the agonizing choice to terminate for medical reasons.

Hi. My name is Jaide, and on July 30th, 2015 we had a termination for medical reasons. We lost our daughter, Ellie-Mae Sarah.

We were so happy to be pregnant, as we’d been trying for 3 years. I have endometriosis and PCOS (polycystic ovarian syndrome), so it had been a struggle to conceive. Ellie-Mae was our little miracle. We instantly felt she was a little girl, and had her name picked.

Around 8 weeks, I had some cramping and was referred to have an early scan, as doctors were worried I was having an ectopic pregnancy. Everything looked great and we were so happy with the news.

We went to our dating scan on June 30th, 2015. I was 12 weeks and 5 days. That’s when our lives changed forever.

We were told there was a large cystic hygroma on the back of our baby’s neck, and sent to sit in a room to speak to someone. We were referred to another hospital to see a specialist in the fetal medicine unit.

6 days later, it was confirmed that there was something wrong with our baby, and that the hygroma measured 22mm. We were offered a termination for medical reasons at that point but declined, as our baby still had a 10% chance of survival.

They couldn’t do any testing at that point, as my placenta was in the wrong place. We were told to hope for the best, but expect the worst. They’d see us back in 3 weeks to see how things were progressing.

I went back at 16 weeks and 4 days (July 27th, 2015). We received the worst news imaginable. Ellie-Mae now had 2 large cystic hygromas on the back of her neck, fluid around her heart, in both lungs, in her tummy, and under her skin from head to toe.

She was in heart failure, and there was hardly any amniotic fluid around her, as it was all inside her (this is called hydrops).

She was now given a 0% chance of survival. We had to make the decision to keep going with the pregnancy, or to let her go.

Doctors suspected she had Turner Syndrome, but they couldn’t know for sure, as there was not enough amniotic fluid for them to be able to do an amniocentesis.

We decided we didn’t want her to suffer anymore, and that we’d terminate for medical reasons.

We went home and the next day (July 28th, 2015) we went back for me to start the process. I took the first tablet to end the pregnancy.

I don’t remember much about the next few days. I cried so much, and even the hospital staff was crying with me.

At 9 am on July 30th, 2015, I went to the hospital again to be induced. A pessary was placed inside me and I started getting slight contractions around 11:30 am.

By 12:45 pm I was in full blown labor. I delivered our beautiful girl at 1:10 pm.

What happened next was very upsetting for my husband. I stood up to move right as my water broke. Ellie-Mae had come straight away and, as I stood up the cord snapped.

Ellie-Mae fell on my husband’s feet.

The nurse was very apologetic about this. It is just something my hubby and I will never forget.

The next few weeks are a blur.

A post-mortem was done, and we were informed that Ellie-Mae did have Turner Syndrome. I got a call from the hospital telling me that my “fetus” was back from post-mortem.

This still upsets me that they used the word “fetus” instead of baby.

We laid Ellie-Mae to rest on August 27th, 2015

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