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Myelomeningocele- Spina Bifida

spina bifida termination for medical reasons

We passed our 12w scan. Yay!

All was well. We told the world we were expecting our little surprise. Little did we know our lives would change forever in 8 weeks.  

Our 20 week morphology scan showed our beautiful baby girl had an issue with her spine. We didn’t think much of this at first. We had never known or heard about Spina Bifida.

After an appointment with fetal medicine and a lot of testing, we were devastated to hear our little Emily had the most severe case of spina bifida.

We had 3 weeks of emotions, diagnosis, medical information, tears, anger, frustration, hope. Every little faith you could have in the trust of the medical team we held onto, praying someone got it wrong.

After many specialist’s opinions, we had to make the most heartbreaking decision to end our daughter’s life, at just 23 weeks.

Nothing can ever prepare you to hear the diagnosis, and then to make a decision for their life.
We were told her life would be incredibly hard.

  • She would be born with a large sac on her lower back which was filled with fluid- which needed immediate surgery once born.
  • She would have total loss of control of bowel and bladder.
  • She would have issues with fluid on the brain which would most likely require a stunt.
  • She would have no feeling in her legs due to the severity of her spina bifida location.
  • She would possibly be born with club feet which would have required orthotics.

The list seemed endless. Every single part of her life and body was affected in some way.

This is not the life she deserved, nor was it the life she should be handed.

I hold no grudge in a choice a parent makes for their disabled child, but this was purely our decision for our daughter.

Emily was born at 23 weeks 3 days. She was sleeping.

We held her, kissed her, cried for her, apologised to her.

She was absolutely beautiful.

She had the most beautiful little button chin I’ve ever seen.

She was just perfect, devine.

She did not suffer through the birth. She had her last breaths inside of me- her home, under my heart, where she was safe & pain-free.

I felt her last movements, where she was still just able to kick. We were told this would eventually stop if we had continued the pregnancy.

Emily was born with a large visible spina bifida sac on her spine. It looked painful, and it was horrible to see the size it was on such a tiny body.

We were gifted a beautiful gown from Angel Gowns and photography was taken by Heartfelt- images that I will forever cherish and be thankful for. It’s been 6 months and I haven’t been able to look through them since I first got them, but I have them and I know one day when ready I will.

Making the decision to end your pregnancy for medical reasons is probably one of the most hardest and traumatic events you will ever experience. I would never wish it on anyone.

I felt sick knowing she was inside me, but I could not bring her home.

I gave birth the same way I had with my 2 previous births. I was in a birthing suite, in the maternity ward. I was surrounded by women giving birth, families visiting with gifts & flowers, parents taking their newborn babies home- all whilst I was holding my sleeping baby.

Saying goodbye was the hardest part- leaving her in her cuddle cot and walking away. I will never forget how we felt when we left the room. I arrived home and slept for 13 hours. I was broken and my heart was physically hurting.

The person I was before Emily, is now gone.

I don’t remember who I was before Emily. I don’t even know who I am supposed to be, but I know I have to continue to be the best mum I can be for my 2 sons- they need me.

We talk of Emily everyday. My toddler says goodnight to her every night by kissing her photo or looking up at the stars with her little brother.

We hold keepsakes, memories of Emily that we will cherish forever. We have an amazing supportive family who have helped us.

If you are reading this, know you are not alone. I know it feels like you are but I hear you, I feel you. I support you.

We will continue to live with the pain of losing our baby girl, so she never had to endure this pain herself. She will never suffer.

She will always be loved- today, tomorrow and always.

In memory of our little Emily.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

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