A devastated mom fears her 16 month-old daughter may need a second liver transplant because of a condition causing cirrhosis, or scarring, more commonly seen in alcoholics.
Kamiesha Kelly discovered she was pregnant in April 2018, and was a “happy surprise" for her and her partner Dakarai Ryan.
But the couple's joy when little Milly was born on January 18, turned to despair a few months later when she was diagnosed with the rare liver condition, biliary atresia and told she needed a transplant to survive.
Their prayers were answered in October 2019 when she received a donor organ. But, but six months later, in April 2020, they discovered her body was rejecting it.
“It was exhausting more than anything else. You just think the worst," Kelly said.
“It's like, 'What now? How much more can we take?' It was heartbreaking."
“You have to force yourself to find the hope, even when you feel like you can't – it's just so draining," she said.
“I wouldn't have suspected I was pregnant if it wasn't for my emotions being all over the place."
Understandably her emotions were running high.
“I was getting very upset and crying a lot. I went to cancel my internet service one evening. I had to pay a leaving fee and I was crying my eyes out down the phone to my provider," she said.
“I knew something was wrong after that and remembered having a similar breakdown when I was pregnant before. So, two days later, I bought a pregnancy test."
“After the fourth one was positive, I finally believed it. It was a surprise – but a pleasant surprise."
“And when I told Dakarai the next morning, he couldn't stop smiling. For the whole day he had this huge smile on his face," she continued.
Doctors induced her and her waters broke two days later, leading to Milly's arrival on January 18.
“They tried everything to get her out," Kelly recalled. “After three tanks of air and an epidural she finally came."
“She was seemingly happy and healthy and the next day we were out of there," she said.
But Milly was not a contented baby. She would “scream the house down," according to her mom and had an insatiable appetite.
Kelly, who just thought she was “grouchy."
“Milly would just cry and scream all day long. She refused to nap and was always up," she said.
“No matter how much we fed her she was never satisfied."
But, a month later her eyes started turning yellow.
“They were yellow like the shining sun," Kelly said.
She was advised to see her doctor, who suggested she might be suffering with acid reflux and prescribed Gaviscon.
“The doctor wasn't worried about the color of her eyes," Kelly explained.
“She said it was quite common in newborns."
But, with no improvement in the coming weeks, Milly's aunt, Natalie, offered to pay for a private consultation with a pediatrician and the couple jumped at the chance.
“Dakarai and I went in expecting to talk about Milly's hunger and possible jaundice," Kelly said.
“But after feeling her stomach the doctor turned to us and said, 'I need a few minutes.'"
“He came back in the room and asked us to sit down. I knew then it was serious and, at that point, I was hysterical."
She was told her daughter had suspected biliary atresia, which affects 0.58 in 10,000 births in England and Wales according to the UK National Screening Committee.
They discovered it happens when the liver's bile ducts become blocked.
The following day, blood and urine tests at their local A&E department confirmed the devastating diagnosis.
“When they told us Milly needed a new liver, I was in a flood of tears," Kelly said.
“All I could think was, 'Why is this happening? Why can't it be straight forward?' It was actually heartbreaking."
But, with no organ immediately available, doctors remained hopeful that they could still help Milly. She was booked in for surgery five days later, during which they hoped to re-establish the flow of bile from the liver.
However, less than an hour into the three-hour operation, Kelly received gut wrenching news.
“I went to the cafe to eat some food while Milly was under," she said.
“Before my food arrived, I got a call from one of the nurses to say that the surgery couldn't go ahead as her liver was too damaged."
While Milly spent the next three days recovering in hospital, her parents were told she would now need a new liver to have any hope of surviving.
For the next eight months, Milly was given a combination of steroids, pain relief and vitamins while she waited for an organ match.
“Those were the hardest eight months of my life," Kelly explained.
“Milly was in so much pain, her stomach kept getting bigger and bigger. It felt like we'd had all the special moments of her first year with us stolen."
During a monthly check-up, in October 2019, Kelly was told they had found a liver match for Milly. And, they were blue-lighted to a nearby hospital where the organ was waiting.
“I couldn't control myself – I was crying with joy," Kelly said.
“Every emotion you can think of was running through my body. We were all so excited for her and she didn't even know – she was too young to understand."
After seven hours of surgery, the operation was hailed a success and Milly spent the next month in hospital recovering from the massive procedure.
Discharged on November she seemed to be getting stronger.
“Everything was going okay," Kelly explained.
“Milly started doing the things she'd missed out on, like sitting on the sofa on her own and babbling. She was putting on weight and seemed to be responding well."
But, in February, blood tests at a routine check-up revealed that Milly's liver was not functioning properly.
Over the next two months, doctors did their best to stabilize her by increasing her anti-rejection drugs without success.
Despite their best efforts, a biopsy from Milly's liver confirmed her body was rejecting the donor organ.
“Because of lockdown the doctors have pushed back Milly's review, which will tell us exactly what the next steps are," Kelly said
“Worst case scenario, she is going to be re-listed for a new liver and I'm not sure we can go through that again."
Now the couple have launched a GoFundMe page, hoping to raise $12,000 to fund treatment outside the NHS if needed.
“It was only going private that ended up getting Milly diagnosed in the first place and even then it was too late," Kelly explained.
“We knew something was wrong with Milly when she was just a month old," she continued.
“Maybe we wouldn't be in this position if someone had listened sooner, which is why we want to raise this money so we can afford to pay privately."
The couple are now considering taking legal action, as they believe some of Milly's NHS treatment has been flawed.
“We want to have enough money to be able to take her to a private doctor once a week if needs be, which can cost £300 for one appointment," she continued.
“If we went once a week that's over £1,000 a month and that's without the expenses of accommodation and travel."
“We're hoping that, by seeing a private doctor, we might be able to stop Milly going on the donor list, as she will get the best possible treatment as soon as possible."
To donate to Milly's GoFundMe, visit here.
