Brave Clermiston couple handed lifeline for unborn son with rare condition

An inspirational young Edinburgh couple are set to be offered a revolutionary in the womb surgery for their unborn son who had been diagnosed with the rare condition Spina Bifida.

The surgery is carried out by the world renowned Great Ormond Street Hospital in London and is the only place where unborn babies can get the life altering operation in the UK.

Parents Ami Milligan, 23 and Ross MacDonald, 24, from Clermiston discovered that their unborn son had issues with his spine during a routine 20 week scan to check for any abnormalities or problems.

In a state of panic they were rushed from their scan in Leith to the Royal Infirmary where it was revealed that their child had the most severe case of Spina Bifida - Myelomeningocele.

Brave Clermiston couple handed lifeline for unborn son with rare condition

The couple were then told that after birth, their son may well have severe issues with mobility, controlling their bladder and bowel, epilepsy, brain damage as well as eating or swallowing.

Doctors then said they had two options: to carry forward with the pregnancy knowing the risks that posed to living standards in the future or to make the heart breaking decision to terminate the pregnancy.

NHS worker Ami said: “It was the longest journey of our lives going from Leith to the Royal, you do think what would happen if a problem arose but you just put it to the back of your mind and never think it will be you.

“It was a bit of a blur and I don't even know what I was thinking at the time. Confusion and the unknown just took over. We wanted answers there and then pretty much and were only given two options and obviously the worst case scenario hit us like a tonne of bricks.

Ami and Ross with their cat

“It felt like we were given no chance and in a way our baby was written off but we knew we had to do everything to fight for our little boy to have every chance in life.”

The issue had been identified as a hole in the spine as well as the back and the couple were left over the weekend to carefully consider their next move.

All the couple had been given was a small leaflet explaining the condition before they left to return home.

This led to Ami and Ross, a local authority IT worker, researching the condition online and it was there that they discovered a new surgery that came to the UK in 2018 to treat spina bifida.

The 12 week scan and announcement of the pregnancy that was met with joy by friends and family

But the only place this was available was at the Great Ormond Street hospital as it is not yet a surgery that is offered on the NHS.

It is a complex operation which is carried out at 25 weeks of pregnancy and involves opening up the mother's stomach and womb, exposing the Spina Bifida but keeping baby in the sac and not delivering him, closing the hole in the spine, putting the baby back inside the womb safely and stitching the mother back up.

Ross said: “We spoke with midwives, doctors, neurosurgeons, neurologists and teams that specialise in children with Spina Bifida. They gave us all the information we needed and were so unbelievably helpful. One doctor even spent over an hour assuaging our fears and gave us a sense of hope again.

“At this stage baby is still able to move and kick his legs around in the womb so one of the major benefits of this surgery is although it won’t be able to cure the Spina Bifida as nothing can, it can help prevent any further damage being done from now until he is born. Which means preserving the movement he has in his legs at the minute and this gives him a greater chance of being able to walk.

16 week scan and gender reveal

“As this was something we were interested in, a doctor phoned the surgeons at Great Ormond Street to find out if I met the criteria to be considered for the surgery.. which we did. We just have one more step before we are given the green light.

“Previously a woman in the UK had gone through with the surgery and now her child walking and being able to sit up themselves - the surgery drastically increased the chances of more positive outcomes in terms of standards of living and that is what we are hoping to achieve.

"By telling our story I hope we can raise awareness for others and that people will not feel so alone if they find themselves in our position.”

The couple say that they are extremely grateful to NHS Lothian for all of the outstanding treatment that they received as well as to their family and friends who have rallied around them.

And as a thank you to Great Ormond Street, the couple is asking anyone who can to donate to do so in order for the charity to continue to bring hope to young families facing hardship.

A Great Ormond Street Hospital spokesperson said: “When a baby has spina bifida, the spinal canal does not close completely in the womb, leaving the spinal cord exposed from an early stage in pregnancy. This results in changes to the brain, as well as severe permanent damage to the nerves on the lower half of the body.

“By operating in the womb, we are able to close the defect and repair the uterus to leave the baby safely inside until they are born. This type of surgery is an alternative to postnatal surgery and while neither surgery is fully curative, foetal surgery allows the defect to be closed earlier and therefore prevents damage to the spinal cord in the last trimester of pregnancy.

“It is extremely gratifying to see children benefiting from this type of surgery offered by the multidisciplinary foetal surgery team at Great Ormond Street Hospital, UCLH and Leuven Belgium."

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