Changing my baby’s nappy I noticed her poo was a bizarre colour – it was the first sign of the horror to come
WHEN Rae Harwood was changing her newborn baby’s nappy and noticed her poo had gone a chalky white colour, she asked her GP for advice.
But the mum had recently stopped breastfeeding and was advised in a telephone consultation that the change in Gracie’s stools was just down to her different diet.
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Rae, 30, says: “What I didn’t know, then, was that white poo in babies is a danger sign, indicating possible liver disease.
“I want to speak out to let other parents know this is something they should look out for.”
Gracie was the second baby for Rae and husband Jake, 32, a heating engineer.
Born on January 25, 2022, she was seemingly healthy, a sister to Jack, a year her senior.
READ MORE ON LIVER CONDITIONS
But at five weeks old, her parents noticed that suddenly her stools were looking different.
Rae recalls: “Three weeks later, Gracie’s poo was still an odd chalky colour.
“Then, at a routine mum and baby checkup, the doctor said she was looking yellow and jaundiced.
“We hadn’t noticed that, because of being with her, all day, every day.
“That GP referred us straight to hospital.
“Even then, we just thought our baby would be put under one of those heat lamps, and everything would be fine.”
But two days later, after tests and scans at their local Medway Maritime Hospital, came some distressing news.
A doctor told the parents Gracie had a suspected liver problem called biliary atresia.
It meant there were blockages in her liver, so bile fluid couldn’t pass through – that’s why her stools were a strange colour and her skin had a yellow tinge.
It was dreadfully upsetting. We simply hadn’t realised that she was seriously ill.
Rae Harwood
The baby was referred to the nearest specialist liver hospital, Kings College Hospital, South London, for an operation.
Her shocked parents were warned that if the surgery didn’t work – and the chances were only 50/50 – their baby would need a liver transplant.
Rae says: “It was dreadfully upsetting. Until then, we simply hadn’t realised that she was seriously ill.”
Over the next few days, the diagnosis was confirmed.
Rae says: “While Gracie awaited her operation, I was able to stay by her bedside, but Jake had to return home to look after Jack, and go to work, so faced a lengthy daily commute to visit us.
“Being on my own most of the time was really hard. Everything was a constant worry.”
Fortunately, on the day of the operation, they were offered a room by Ronald McDonald House Charities, which provides free temporary accommodation for parents with children being treated at some hospitals.
Rae continues: “Gracie was in the operating theatre for about six hours.
“The next few days were a real ordeal. She was crying all the time from pain, and because she was so tiny, couldn’t have much pain relief, but at least we were all together.”
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Afterwards, the worried parents needed to wait a while to see how their baby’s body settled down.
But in July they learned the surgery hadn’t been fully successful.
While it was keeping Gracie alive in the short term, she was now in urgent need of a transplant.
For weeks, the family were back and forth between their home in Strood, Kent, and various hospitals.
Rae says: “It was horribly stressful. Gracie’s liver disease was progressing, and her tiny frail body was increasingly malnourished and weak.
“She itched all the time from excess bilirubin in her skin, and kept tearing at herself – she had to wear mittens to prevent damage.
“She was being fed through a tube to keep her nourished and hydrated.”
As the weeks dragged by, Gracie grew ever more yellow, her hair changed colour, her eyes looked smoke-damaged, and her tummy and pelvis swelled as they filled with fluid, because her liver had stopped making the proteins needed to break her milk down.
“Eventually, the poor little thing was so full of fluid, she started to develop breathing problems,” Rae says.
Yet, despite all this, somehow the brave baby was always smiling.
Nurses told her parents: “She’s the happiest baby on the ward!”
‘Touch and go’
Meanwhile, everyone in the family was being tested as a potential liver donor.
Rae says: “Finally, we got some good news. Gracie and I were compatible, which meant that I would be able to donate part of my liver for our daughter.
“The part of my body that I gave to her would eventually regenerate inside me.”
But first, she had to go through extensive tests, both physical and mental, which took some weeks.
Finally, the transplant surgery was scheduled for December 16, 2022.
“We got as far as being prepped for the op, when something unforeseen happened – scores of concertgoers were injured in a crush at The O2 Academy, Brixton, and the emergency beds at Kings College Hospital were suddenly filled,” Rae says.
“With no room left in intensive care, our operation was cancelled.”
On the positive side, that meant Gracie could spend her first Christmas at home, while her surgery was rescheduled for January 13, 2023.
Rae continues: “That time, the operation happened, as planned.
“Gracie’s diseased liver was removed and I donated 20 per cent of my own liver, to save her. Thankfully, everything went really well.
“Jake was able to stay at Ronald McDonald house again so he was close by to offer support.
“I really needed him when I suffered a medical emergency in the form of an unusual reaction to morphine.
“Nurses found me unresponsive in my bed, and for a few hours it was touch and go.”
Could your child be at risk of biliary atresia?
Biliary atresia is a liver condition that gradually gets worse over time.
It can occur either before birth, due to the bile ducts developing abnormally, or shortly after birth, because the bile ducts become inflamed or obstructed.
The exact cause is unknown, but there is no evidence to suggest it can be passed on to children by their parents.
The earliest symptoms, which can appear in the first weeks of life, include:
- Jaundice (yellowing of the skin and whites of the eyes)
- Yellow or dark urine (it is usually clear in newborns)
- Pale, white or grey stools (newborn poo is normally green or yellow)
Once diagnosed (usually through blood tests, urine samples, ultrasounds, liver excretion tests and biopsies), biliary atresia requires surgery.
About 15 out of 100 babies with the condition may have additional problems found during the operation, such as small spleens and heart defects.
But most children go on to live happy, healthy lives.
If untreated, however, the condition can lead to liver failure and death.
Rae was in hospital for six days before being allowed home. Gracie was an in-patient for 13 days.
But the family’s rollercoaster journey wasn’t over yet. After developing a fever, Gracie was diagnosed with sepsis (a life-threatening reaction to an infection), and rushed back to Kings College Hospital.
“Thankfully our little fighter survived that crisis, too, and since then she has gone from strength to strength,” says Rae.
“Today she’s full of life and is just like other happy little girls her age.
“Full of fun and giggles, and with a passion for Peppa Pig and Disney Princesses.”
In January 2024, the Harwoods held a massive party to celebrate a year since the transplant and raised almost £5,000 for Ronald McDonald House Charities.
They are continuing to raise money through JustGiving.
“Of course, Gracie will always be on medication to prevent her rejecting her new liver, and it’s possible she may need another transplant in the future, but we’ll cross that bridge when we get there,” Rae says.
“Sometimes I look at her and think: ‘There is a part of my body inside you, that will go with you wherever you are’.
“To me, that feels like our family’s very own miracle.”
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