HAVING a doctor say you should consider aborting your unborn baby is a devastating blow for any mum-to-be.
But for Amy Palmer, choosing not to follow that expert advice was the best thing she ever did.
When the 33-year-old fell pregnant unexpectedly, she and her husband Billy, also 33, had a routine 12-week NHS scan which threw up no concerns.
The pair, from Croydon, south London, decided to fork out for a £90 private ultrasound to get a better quality image.
It was then that they discovered that they were expecting a little girl.
Amy, already mum to two boys – Billy Junior and Toby, said: "After two sons, we thought it would be so lovely to have a daughter.
"We started talking about names – Daisy, Rose, Amerlia".
At 20 weeks pregnant, Amy returned for her next routine NHS scan.
But this time the radiographer told her that there might be a problem with her baby's internal organs.
They said that she had to be sent for more detailed investigations and the couple was referred for an urgent appointment at St George's Hospital, Tooting.
Amy said: “For 20 minutes, we watched as the consultant silently scanned back and forth, taking detailed pictures and measurements of our baby.
"There she was, stretching. There she was, yawning.”
But as soon as the doc put down his scanner, the mood in the room changed.
Amy said that he told the couple: "I'm afraid your baby has a Congenital Diaphragmatic Hernia – known as CDH.
"It means her diaphragm has formed imperfectly, and there's a large hole. Her intestines are protruding up into the chest cavity, alongside the heart and lungs.”
I made sure only to read the survivors' stories – I didn't want to allow any fear or negativity, into my head
Up to 60 per cent of babies with the condition pass away as a result of it.
The doctor continued: "I think we need to discuss your options. You may want to consider a termination."
At that point, Amy says that her blood "ran cold".
"I didn't even want to think about such a thing, and I knew Billy wouldn't, either.
“So without even discussing it with my other half, I said: 'No way. We've just watched our baby on the screen. We've seen her face. She's already a little person.
"'We're going ahead with this pregnancy – even if she has only a tiny chance of survival, we must give her that chance'."
Back home, the couple tried not to dwell too much on what might happen.
“I went online and found a support group, CDH UK. Their website divided the members' stories into those of babies who survived, and babies who didn't," Amy said.
"I made sure only to read the survivors' stories – I didn't want to allow any fear or negativity, into my head."
As her belly grew bigger, her son Billy Junior became increasingly excited at the prospect of metting his little sister.
The couple decided that they had to prepare him for the worst, just in case.
"We sat down for a chat, telling him: 'The baby’s poorly. We don't know yet what will happen, but she might die'," said Amy.
“He was very upset, but seemed to accept it. We didn’t say anything to Toby – he was still a baby himself, at the time.”
What is CDH?
CDH is short for Congenital Diaphragmatic Hernia.
Affected babies are born with a hole in their diaphragm, the thin sheet of muscle that helps us to breathe and keeps our chest and stomach contents separate.
This means the abdominal contents then protrude into the chest cavity.
CDH occurs in 1 in 2500 births. Some studies have suggested that it is more common in boys than in girls.
There is currently no known cause or risk factor, but there are probably a number of factors including environmental and genetic.
A measurement called LHR (lung to head ratio) is often used by doctors to help them to assess the severity of the hernia and plan the best management for the baby.
But as each case is different, some babies with extremely good prospects before birth fail to do well and some babies with very little lung and a poor outlook will do extremely well.
You can find out more at www.cdhuk.org.uk
At 35 weeks, scans revealed that Amy's baby had stopped growing and she was rushed to hospital to be induced.
Maisie was born on December 16, 2013, weighing 5lb 2oz.
Amy said: “The birth went well, but doctors had warned, when she came into the world, they didn't want her to cry, for fear of damaging her lungs.
"Then as she came out of my body, she opened her mouth and gave a little squawk."
Panicking as doctors rushed the little baby away, the couple were finally able to visit Maisie in the special care baby unit hours later.
"Oh no!" I told Billy in dismay, as the doctors rushed her away, before we'd even had a chance to see her. "She wasn't supposed to cry! I hope she's going to be all right."
Hours later, the parents visited their newborn in the special care baby unit.
“She lay there inside a plastic bag inside an incubator, with breathing and feeding tubes, wired up to beeping machines and alarms,” said Amy.
We took a leap into the unknown, closed our minds to the awful things that might happen, and just allowed a new life to grow
“She looked like she was shivering with cold, but nurses told us that the plastic bag was keeping her warm, and her tremors were just a side effect of the ventilator helping her to breathe.”
After some investigations, docs discovered that Maisie's liver and bowel had moved into her chest cavity – disallowing her second lung to properly develop.
She was also born with pulmonary hypertension.
Nevertheless, at 12 days old, Maisie was strong enough to undergo five hours of surgery to repair her diaphragm.
Afterwards, she was under sedation, while her body rested and healed.
Amy recalled: “We visited daily, sitting by her incubator for hours, just talking to her, but to be honest it was just to make us feel better – she didn't know we were there.
“But at three weeks old, she opened her eyes for the first time and looked straight at us – it was amazing.
“Now, at last, we got the chance for our first-ever cuddle with our baby girl. As I held her, a wave of maternal love washed over with me. I'd bonded with Maisie so strongly, while she was still in the womb, but there’d been times when I feared this day would never come.”
Their daughter needed 24 days of intensive care, then a further 31 days of high dependency nursing, and a final 30 days in hospital after that.
At ten weeks old, her blood pressure was normal, her nasal feeding tube was removed and she could now take a bottle.
At 12 weeks old, she finally came home.
Since then, Maisie has thrived.
She reached all her milestones early and is able to eat normally, although because she has always been small for her age, at one year old, doctors decided she needed a supplementary tube feed through a mini button in her tummy, to keep her weight up.
Maisie has told her mum that she wants to be a nurse when she grows up so that she can help other poorly children.
She started school last September, where teachers had to be specially-trained to give her a tube feed of high-calorie milk, during the lunch break.
Her lung function remains less than normal and every winter she tends to suffer nasty colds and coughs that wipe her out, and can sometimes go blue around the mouth.
Amy, who married Billy in 2014, says: “So far, at school, Maisie excels at everything. She has really good concentration and memory. She’s a wonderful little girl.
“But it still makes me extremely emotional when I remember that there was a point where it was suggested that my pregnancy could – and possibly even should – be terminated.
“Of course, Maisie wouldn't be here today without the fantastic care she received from the NHS. Once we decided to continue with our pregnancy, the staff in many departments and wards gave us wholehearted support, and we can never thank them enough.
“But even so, on that day when we were given the scan results, it still came down to gut instinct, urging Billy and me to give Maisie a chance.
"We took a leap into the unknown, closed our minds to the awful things that might happen, and just allowed a new life to grow.
“Seeing our beautiful little girl today, I’m so very thankful that we did.”
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