healthmedicinet

• Natalie Brown and Peter Gordon were told their baby would not survive
• Pregnancy scans suggested she had a rare and terminal condition
• They prepared themselves for her death after she was born by C-section
• They were overjoyed when baby Elsie was delivered full of life
  
• She was soon discharged from hospital and now doctors believe she actually has a much less serious condition only affecting her legs
  

By
Kelly Strange

Published:

06:35 EST, 13 May 2014

|
Updated:

07:46 EST, 13 May 2014

A devastated couple cancelled their order for a pram and a cot when they were told their unborn baby had a one per cent chance of survival – but were elated when she was born full of life.

Natalie Brown, 32, and her partner Peter Gordon, 42, had been told a rare terminal condition meant their daughter, Elsie, would either be stillborn or die shortly after birth.

But to everyone’s complete shock, the baby was born full of life.

Natalie Brown and her partner Peter Gordon were told baby Elsie had just a one per cent chance of survival

In fact, Elsie proved so well that she was discharged for her overjoyed parents to take home just five days later.

Ms Brown, from Evesham, in Worcestershire, said: ‘It feels like a miracle after being told they were 99 per cent sure she would die. In the end we had to try and accept it and prepare for the worst.

‘We had even started to arrange her funeral. I have to keep pinching myself. I can’t believe how lucky we have been to have her home.

‘We had no cot and pram because everything had gone back. When doctors tell you there is just a one per cent chance your baby will live you need to be prepared for the worst.’

Now the couple, who both work as teaching assistants, are waiting for the original terminal diagnosis to be ruled out as they suspect Elsie’s condition is in fact a much less serious joint disorder affecting just her legs.

But Ms Brown has praised medics for the care she received and says she is just delighted and relieved to have her daughter alive.

Before she was born, it was believed that Elsie had a rare and terminal genetic condition

Doctors were amazed when Elsie was delivered full of life and they now believe she actually has a much less serious condition which just affects her legs

The drama started at the 20-week scan when the parents-to-be were told there were abnormalities with their baby daughter’s legs.

Ms Brown said: ‘Scans revealed she had club feet and her knees and hips were fixed in a contracted position, a bit like a kneeling Buddha. Nobody could tell us why.’

The couple were given the option to terminate their pregnancy then, but refused to make any decisions until they knew what was causing the abnormalities. 

WHAT IS FOETAL AKINESIA DEFORMATION SEQUENCE?

Foetal akinesia deformation sequence is a condition which causes reduced foetal movement and growth.

It also causes the joints to seize, facial abnormalities, underdevelopment of the lungs and other developmental abnormalities.

About 30 per cent of babies with the condition are stillborn while most of the rest only survive for a short time after birth.

They die because of complications caused by the underdevelopment of their lungs.

It can be inherited but in some cases it is caused by a random gene mutation.

Source: Office of Rare Diseases Research

Ms Brown explains: ‘There was no way we were going to abort our baby just because she had club feet or problems with her legs.

‘Disabilities are not a barrier to a happy life. But the doctors were concerned that the disabilities may have been caused by a genetic condition with much more serious implications.’

Eventually tests pointed to a rare nerve condition called foetal akinesia deformation sequence.

It’s fatal and begins by fusing limbs, before shutting down vital organs causing death in unborn babies. If the babies do survive birth, they only live a short time after.

Ms Brown says: ‘We were devastated. No test could tell us for certain that is what Elsie had.

‘We would just have to wait and see how it progressed for the rest of the pregnancy. I was advised to look out for reduced movement, a sign other limbs were fusing.’

The couple remained positive, but when at 32-weeks their baby’s movements slowed dramatically, Ms Brown returned to the hospital for more scans fearing the worst.

Tragically, they revealed that the baby’s arms were now still, leading medics to conclude she did have the condition and it was spreading.

Ms Brown said: ‘We were taken into a side room after the scan and told our baby had a less than one per cent chance of survival.

The couple were told that there was a problem after prenatal scans revealed abnormalities in Elsie’s legs

Mr Gordon and Ms Brown decided not to terminate the pregnancy so as to give Elsie a chance but they cancelled orders for a pram and a cot and started to plan her funeral

‘We cried and cried because we hadn’t given up on her but now it felt like all hope had gone. I desperately wanted to believe they were wrong but you cannot ignore what the professionals are telling you.

‘The only comfort we had was that we had given her every chance by not terminating the pregnancy at 20-weeks.’

The couple, who already have three children between them by past relationships, faced the heart-breaking task of telling Ms Brown’s daughters, aged five and seven, and Mr Gordon’s daughter, aged eight.

Ms Brown says: ‘The girls were so excited about having a baby sister. But after being told she had a one per cent chance of life we had to try and prepare them in some way for the fact Elsie wasn’t coming home.

‘We called them together and gently told them that their sister would be going straight to heaven to watch over us all.

‘The girls were confused and upset but very accepting in that way that children can be.’

Elsie was eventually delivered by C-section and doctors were stunned when she started crying. She was taken to the special care baby unit for monitoring as doctors started to reconsider her diagnosis

Amazingly, the couple (pictured before the birth) were able to take Elsie home just five days after her birth

Heartbreakingly, they then had to prepare for a birth and a funeral.

Ms Brown said: ‘I just couldn’t face it so Peter spoke to the undertakers about our situation so they were ready to organise everything when the time came.’

The couple also cancelled their delivery of a new pram and cot and packed away the new nursery.

Ms Brown said: ‘It was too painful to see everything in there knowing it would never be used.’

At 39-weeks Ms Brown was admitted for an induction at the Worcestershire Royal Hospital.

The parents agreed that their baby should be offered comfort care only to ease any suffering in her final moments.

Ms Brown said: ‘It feels like a miracle after being told they were 99 per cent sure she would die’

Elsie is now 11 weeks old and she is thriving despite her initial terrible prognosis

Ms Brown said: ‘It was heart-breaking to be discussing things like that while I was in labour. All I hoped was that she might live long enough for us to meet her and have a cuddle.’

It was for this reason that Ms Brown opted to have her labour monitored, meaning if the baby showed signs of distress action would be taken to assist her delivery.

She said: ‘Because nobody expected her to live they said they were happy for me not to be monitored. But I felt I needed to know if my baby was coming into the world alive or dead even if she wasn’t going to live long.

‘We had got through the whole pregnancy, I didn’t want her to die during birth if there was a chance I got to hold her, if only for a few minutes.’

Finally, after an 18 hour labour and with the baby in distress, she was rushed into theatre for an emergency C-section.

Ms Brown said: ‘I thought it was the end. But when they lifted her out she was crying and moving her arms and basically doing all the things we had been warned she wouldn’t do.’

Ms Brown said: ‘We are in no way at all angry about what has happened, just so pleased that they were wrong or Elsie wouldn’t be here today’

They were supposed to hand her to me to pass away in my arms but her cries seemed to be getting stronger.

‘I was exhausted but kept thinking: “They’ve got it wrong. She’s not dying or they would have given her to me by now”.’

Eventually she was briefly shown to her shocked parents and rushed to special baby care for assessment.

Ms Brown recalls: ‘Her eyes were wide open looking around. It wasn’t what I expected at all.’

Finally the couple went to see their daughter who was breathing unaided but being monitored closely.

Ms Brown said: ‘We were astonished to be told things were looking good and they were very optimistic. Apart from the issue with her legs there appeared to be nothing wrong with her.’

Just five days later they took her home. Ms Brown laughs: ‘We had nothing ready for her but none of that mattered. We just couldn’t believe we had our baby home.

The couple say their other daughters are delighted with their little sister

‘Our daughters were over the moon and kept asking if Elsie had changed her mind about living in heaven. I told them “yes she has”.’

Elsie is now 11 weeks old and is thriving. Consultants are yet to make an alternative diagnosis but have told her parents that they are confident she no longer fits the criteria for foetal akinesia deformation sequence.

Ms Brown said: ‘We are in no way at all angry about what has happened, just so pleased that they were wrong or Elsie wouldn’t be here today.

‘It is such a rare condition and so very hard to diagnose that we know the medics were only doing their very best by telling us what all the signs pointed to.

‘Thankfully, it doesn’t appear now to be the case and we couldn’t be more delighted about that.

‘The care we have received has been absolutely amazing.’

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Comments (10)

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The comments below have been moderated in advance.

usednurse,

Scottish Borders United Kingdom,

1 hour ago

Nobody will have been more delighted to be wrong than the medical staff. It’s always best, but hard, to give people an honest prognosis but it’s fantastic for everyone on the rare occasions it proves wrong.
Congratulations to the whole family and fingers crossed it all works out well for the future.

Berty,

Oxford, Algeria,

1 hour ago

How lovely that this wonderful couple aren’t threatening to sue the hospital!! I hope little Elsie’s hips and legs mend swiftly and she plays for many happy years with her beautiful sisters.

Peter,

Cheshire,

1 hour ago

Congratulations. What a very nice outcome for the family.

null,

United Kingdom,

1 hour ago

How lovely to see someone grateful for a miracle instead of rushing to solicitors to sue! Wishing this beautiful baby a long and healthy life x

Miss Pudding,

Dalaran, United Kingdom,

1 hour ago

Best of luck to them and may their daughter grow up to be a healthy young lady

La,

Plymouth,

1 hour ago

Amazing and beautiful story. So pleased the baby is much healthier than feared. I’ve read a lot of cases where parents are advised to give up on their babies and terminate them, a choice I could never make as like this couple I would hope and pray for a miracle.

June,

Liverpool,

1 hour ago

Fantastic story. So happy for the parents and all their family. I bet this little girl will be cherished.

ben9090,

Doncaster,

1 hour ago

Nice to know they’re delighted without a mention of legal action agains the hospital for getting it wrong.

stylesmg99,

leeds, United Kingdom,

1 hour ago

Start planning for birthday parties

Cheryl,

London,

1 hour ago

How lovely that they gave their baby a chance of life even though the prognosis was so awful. I am so glad they have their lovely little girl. Times ahead will probably be tough but I am sure they will all get through. Their baby is lucky she has such strong, loving and devoted parents.

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