Mum pays heartbreaking tribute to baby girl who died after being diagnosed with rare disease

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A mum who was told her newborn ‘won’t be here in 48 hours’ tells the story of her beautiful daughter as she raises awareness of a rare genetic condition that claimed her life.

Nancy Jo Anne Rogers defied doctors’ expectations time and time again and lived a “perfect” but terribly short life.

The baby girl was born with Smith-Lemli-Opitz syndrome, a condition that affects multiple bodily systems including internal organs, intellectual growth and development, facial features, fingers and toes, reports Teesside Live.

Now her mother Lisa Rogers, from Thornaby, is telling her daughter’s story as she hopes to raise awareness about this rare genetic condition.

She said: “She had the perfect life. We were told she would never smile or get head support and never sit by herself – she was dealing with all those things.

“She was laughing constantly, she started waving and smiling. She developed her own little character.

“All the things we thought she would never do, she did. And more. For a baby who was doing so badly, she achieved more in her nine months of life than most of us. in one year.

After a normal pregnancy, Lisa became concerned about her baby’s movements and visited North Tees University Hospital in September 2020 – when days later she was induced. On Friday, September 25, the health assistant gave birth to her daughter by Caesarean section.

But it wasn’t until Nancy arrived that she and her team of midwives realized something was out of the ordinary. Nancy was taken straight to the special baby care unit which cares for premature or critically ill newborns.

Lisa, now 40, said: “When she was born she didn’t cry. She was having difficulty breathing – she was wheezing. The only thing I remember saying was that she only had four fingers – she didn’t have her little finger on her left hand.

Doctors found Nancy had heart and kidney problems, slanted eyes, webbed toes, a missing finger, and could not suckle or swallow. The newborn was transferred from North Tees University Hospital to the Pediatric Intensive Care Unit at Freeman Hospital.

Lisa continued: “Two days after giving birth by caesarean, I was traveling to Newcastle. I needed time to heal but Nancy came first. I was allowed to change her and hold her but she was so bad. A doctor asked me if I understood how sick she was.



Nancy Rogers photographed as a newborn

“He told me to take her home to meet her family because she won’t be there in 48 hours. They had done everything they could and we just had to wait and see now.

But three weeks later, on October 23, 2020, Nancy came home. The following month, she was diagnosed with Smith-Lemli-Opitz Syndrome (SLOS). Symptoms of SLOS differ from person to person. Some people may have more symptoms than others, and symptoms can range from mild to severe.

People with the syndrome also have abnormally low cholesterol levels in the blood. Lisa only knows of two other people with the disease in the North East, one of whom has sadly passed away.

Despite only having 48 hours to live, Nancy defied the doctors and continued to grow and develop. Although she remained in the care of several hospitals and specialists in the Northeast, Nancy lived a full life.

She spent her first Christmas at home, had three vacations and laughed while spending time in the water. But on July 5, 2021, Nancy was taken to North Tees University Hospital by ambulance where she received treatment after Lisa noticed she was having difficulty breathing.

She sadly died in the children’s ward two days later of heart failure and sepsis.

Lisa continued, “I sat with her the whole time and one minute she was calm and not moving much, then a few hours later she was lively and kicking, playing. I held her in my arms and when I thought she was asleep I put her back in bed and put her oxygen mask back on and she just collapsed on her side and disappeared. She was dead in my arms.

“Doctors and nurses worked on her for 57 minutes. But she was ready to go – she was tired and had had enough. We’re now saying she didn’t want me to have to make the decision to make her undergo open-heart surgery, which has only a 10% survival rate.

“Nancy made her own decision.”

Since Nancy’s death in July last year, Lisa and her family have dedicated themselves to raising awareness of SLOS and raising funds for organizations that have helped Nancy. She collected and donated money, as well as blankets and clothes, to the special care baby unit at North Tees University Hospital.



Lisa collected and donated money, as well as blankets and clothes, to the Special Care Baby Unit at North Tees University Hospital
Lisa collected and donated money, as well as blankets and clothes, to the Special Care Baby Unit at North Tees University Hospital

Lisa said: ‘I can’t describe how grateful I am to everyone in the North Tees Baby Special Care Unit, especially Zoe Kitching and Jayne Jobling.

“Jayne came to Nancy’s funeral and continues to be a great support to me, like many other nurses. Nancy simply wouldn’t have had her nine and a half months without the NHS.

Lisa has also raised money for the Children’s Heart Unit Fund at Freeman Hospital. If you would like to donate to Lisa’s cause, please visit her JustGiving page.

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