Great Britain

I carried my baby knowing she might die minutes after being born – but I’m so glad I put my faith in her

AT just 24 weeks, Samantha Perryman was forced to make the agonising decision no parent should ever have to make - whether or not to abort her unborn baby.

The mum-of-three, 29, had just found out that her baby had a rare form of a condition called spina bifida - which is when a baby's spine and spinal cord don't develop properly in the womb.

And medics told her that if her unborn daughter was to survive the pregnancy she would likely only live for a matter of minutes.

Heartbroken, Samantha desperately researched the disorder and discovered there was only one survivor of the lethal condition - a young boy who lives in Asia.

With this tiny fragment of hope, Samantha chose to fight for their baby and give her the best possible chance of survival.

Samantha said: "It was awful to hear that. I just broke down in tears. I cried for days on end.

"We had the option to terminate the pregnancy but she was an active baby. I felt it would be killing our baby and we decided to give her the chance she deserved."

It was at the 20-week gender scan when the County Durham couple discovered there were complications with Leona-Grace.

The couple, who also are parents to Ella-Louise, six, Rosie-Leigh, five, were transferred to the University Hospital of North Durham where it was confirmed she had spina bifida.

Doctors carried out a further scan at the Royal Victoria Infirmary in Newcastle just weeks later and told them the heartbreaking news that their daughter may only live for a matter of minutes, if she survived being born in the first place.

It was a tough experience for the Craghead family who had no idea how to prepare for the birth of a baby they were likely to never be able to take home.

Samantha was rushed into hospital with unimaginable pains she described as "ten times worse than contractions".

She underwent a c-section on November 18 - five and a half weeks ahead of her due date.

But there was sheer joy in the theatre room when Leona-Grace was born weighing 7lb 8oz.

As soon as I heard her crying I just started crying

Samantha Perryman

Samantha said: "I didn't know how to feel going into the c-section. We were just hoping more than anything.

"But as soon as I heard her crying I just started crying. I think it was a mixture of both joy and relief."

Leona-Grace was placed in special care and the family was forced to wait and see if their daughter would respond well to treatment.

But brave Leona-Grace continued to battle on and was able to undergo vital surgeries.

The first was spinal surgery while the second was to have shunts placed in her head to relieve the build-up of fluid on the brain after the tot developed hydrocephalus.

She was also diagnosed with patent ductus arteriosus (PDA) - a medical condition where the blood vessel that connects the pulmonary artery to the aorta remains open after birth.

It made breathing harder for Leona-Grace who was, and continues to be, 24/7 oxygen dependent.

What is spina bifida?

Spina bifida is when a baby's spine and spinal cord don't develop properly in the womb, causing a gap in the spine.

Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby's brain and spinal cord.

The neural tube starts to form in early pregnancy and closes about 4 weeks after conception.

In spina bifida, part of the neural tube doesn't develop or close properly, leading to defects in the spinal cord and bones of the spine (vertebrae).

It's not known what causes spina bifida, but a lack of folic acid before and in the early stages of pregnancy is a significant risk factor.

In most cases of spina bifida, surgery can be used to close the opening in the spine.

But the nervous system will usually already have been damaged, which can lead to problems such as:

Many babies will have or develop hydrocephalus (a build-up of fluid on the brain), which can further damage the brain.

Most people with spina bifida have normal intelligence, but some have learning difficulties.

Source: NHS

The youngster was also born with scoliosis - where the spine twists and curves to the side - and has four ribs missing on the right side and two fused together on the left.

It was on December 20, just over a month after Leona Grace was born, when Samantha and Stephen were given the news they were desperate to hear - they could take their baby girl home.

She said: "It's been fantastic having Leona-Grace at home.

"It was awful having to leave her at hospital each night. But the special care unit at the RVI was fantastic.

"Leona-Grace is a little fighter. We have been told her lungs could haemorrhage and come through her ribs at some stage.

"She has some long-term effects too including her having an 80%-90% chance of not being able to walk."

But at this point they are just overjoyed that Leona-Grace is with the family and making happy memories - a prospect they never saw as a possibility looking back to their 24-week scan.

Samantha added: "We definitely didn't see ourselves in this position a few months ago.

"We have had good days and bad days but it is all worth it now. Doctors are hoping to wean her off the oxygen because she is doing so well.

"I know doctors have to give you the worse case scenario but we're so pleased they got it wrong on this occasion.

"Every second, minute, hour, day is a bonus for us. Leona-Grace is our little miracle."

Doctors use keyhole surgery to repair spine of baby with spina bifida while still inside womb in UK first