Our Story…

Faith Alison Delegate, born sleeping on Sunday 11th July at 12.38pm, weighing 3lb. Youngest sister to 4 siblings. Beloved daughter to Ally and Leon.

While Faith didn’t make it into this world, she experienced so much during her life in the womb of her mummy, Ally. This is a story of Faith’s vast journey, during her 29 weeks and 5 days of life.

February 2021, and much to our surprise, we found out that Ally was 5 weeks pregnant. We soon realised that this baby was an unexpected gift and one which we would welcome with open arms into this world.

At 16 weeks, we had a gender scan and were delighted that we were going to have another little girl…a few weeks later, we decided to share the amazing news with the children. I think it’s fair to say that they were over the moon and were keen to share the news of their baby sister with their friends, teachers and whoever else they passed in the street.

That same week, at our 20 week scan, we heard devastating words from the sonographer…

“I’m sorry, but there is a complication with your baby.”

We were told that our little lady had a severe form of open spina bifida. Our world fell apart around us….what was spina bifida?, what would it mean for our daughter?, would she live a fulfilling life?…we had many, many questions.

We were told that Faith would be paralysed, would not be able to control her bladder or bowel, with unknown effects on the brain and development. Ally threw herself into research and we were given a glimmer of hope when we heard of pioneering fetal surgery. A process whereby professors open the womb during pregnancy and operate on the baby, which is intended to limit nerve damage during pregnancy so that feelings in the lower body and limbs are maintained. The surgery had significant risks, but Ally was determined that fetal surgery was the only option.

Following Peterborough’s first ever referral to specialists in London, we soon headed to the UCLH where we would undergo further scans and assessments to ascertain if we would be eligible for fetal surgery.

Again, devastating news was received in London where we were told that due to the extent of the lesion, our little girl would be paralysed and not even be able to sit herself upright. With surgery we were told that, at best, our baby might be able to sit up, but would be paralysed. Furthermore, due to the position of the placenta, we were told that we would be sent to world leaders in Belgium…

A matter of days later, we were on the Eurostar to Leuven, Belgium. Again, a full day of scans and assessments, but at 4.30pm, these amazing professors finally offered us surgery at 6.30am the following day. The sense of relief and emotion was truly overwhelming. It felt like we’d won the lottery, ten times over.

After 5 hours of surgery on Ally and Faith, the professors met with Leon and said that the surgery couldn’t have gone any better, they said it was a blessed day. It was an experience like no other and we were truly grateful to have been given this opportunity. Following our return to the UK and an excellent recovery by Ally, our little fighter continued to show signs of movement in her legs, feet and even her toes. To see our little girl still moving and kicking in the way that she was, truly shows her character and strength…she was just like her mummy.

On the 9th July at our ultrasound appointment in Addenbrooke’s, our tragedy struck. The worst possible words came from the sonographers mouth…

“I’m sorry there is a problem with your baby
…I’m sorry, your baby has died.”

Our world simply fell apart.

On Sunday 11th July @ 12.38pm, our beautiful girl was born sleeping and delivered at Hinchingbrooke hospital. We later received more devastating news that the reason for her death was completely unrelated to her spina bifida or the fetal surgery, it was due to an umbilical cord accident. Fatality from an umbilical cord accident is 1 in 30,000. Never would this outcome be easy, but this accident made it even harder to accept.

We were so fortunate to spend 27 hours with our baby…to fall asleep with her by our side and to wake up with her the following morning was magical. Our only wish was that she woke up with us. After years of sleepless nights from her older sisters, this was the one time we were begging to be woken up by her, but it didn’t happen…

We were fortunate to have a naming ceremony at the hospital for Faith, which was led by the hospital chaplaincy. When discussing the proceedings for this service, she told us that she had 4 children and that she had sadly lost a baby and that until you’ve experienced this for yourself, there are no words to truly explain the feelings of a parent losing a child. We said we felt a sense of sadness which we never knew existed. She said that the only way she could put in into words was that it was like a beast in the wild, such as a lion, wailing from the bottom of their gut, something which can be heard for miles. We understood this, but for us it is a silent wailing and one which never ends. It simply changes a person and we’ll never be the same.

However, Faith taught us more in her short time with us, than we’ve learnt in the rest of our lives. Faith has made us stronger, more unified, made us more courageous and taught us the importance of hope in life and what it means to keep the faith.

We were praying that Faith would be the first Spina Bifida success story from Peterborough Hospital…not only was she the first referral to the specialists in London from Peterborough, but the first to travel to world leaders in Belgium and the first to go through the pioneering fetal surgery. Ally and Faith were one of only 32 patients in the whole of the UK to have this surgery. They both are a success story and we hope that one day this disease is more widely accepted, in the know that there are options and with hope and belief, Spina Bifida babies can lead happy and fulfilling lives.

We don’t want this story about our Faith to end, we don’t want her to be a memory…