Mum thanks staff who looked after her when her daughter was born with Brittle Bone Disease | News

 Haley, a mum from Birmingham, wants to share her appreciation for the staff at Birmingham Women’s Hospital, who helped her when her daughter Harper was born with Brittle Bone Disease. 
   
Brittle Bone Disease is a genetic condition that causes your bones to be weak and can break easily, and mum Haley has the condition. 
They found out their first child, Harper, had the condition at their 20-week scan. 
 
Haley commented: “We were moved to fetal medicine as soon as they found out, and every week we would go for scans, and we could see all her broken bones. 

 
“As weird as it sounds, it was kind of magical to see and be so informed, the doctors were able to tell me exactly what I was looking at and what bones were what. 
“Her tibia and fibula bones were broken on both sides.” 
 
Haley was originally scheduled to have a cesarean birth at 37 weeks, but Harper was born after an emergency cesarean birth at 36 weeks. 
 
Haley said: "At first, everything seemed okay, but an hour after she was born, she went blue, and she wasn’t breathing. 
“They instantly took her down to the neonatal unit. 
 “It was absolutely horrible, she was fine one minute and then not the next. 
“I remember just crying my eyes out, I didn’t have a clue what was going on, but the nurses and staff were all amazing and kept telling me what was happening. 
“I was an emotional wreck because I didn’t even get to feed her before she had to go down.” 
 
  Harper spent the first five days of her life in the neonatal ward, until she was well enough to be moved to the transitional ward with her Mum. 
 
Haley commented: “I remember I got to hold her for the first time when she was three days old, and it was one of those moments that I’ll never forget in my life. 
“On the 5th day they brought her up to the ward to me, and at this point I was begging for my baby, I just wanted to be with her and see she was okay.” 
 
Haley recalls how the team looking after her and Harper had a huge impact on such a stressful time for their family, and how she remembers their kindness three years on.  
 
Haley said: “My time at the Women’s Hospital was one of the worst times of my life, but one of the best because of the kindness shown to me and to Haper’s dad. 
“One of the nurses who looked after me and Harper was Vicki, who really went above and beyond to make sure I was okay, and she always went out of her way to keep us informed of what was happening with Harper. 
“I was a new mum too, and Vicki taught me everything I needed to know about being a mum. 
“It was just something that I’ll never forget.” 
   
Vicki Newman was one of the staff nurses who looked after Harper and her mum during their stay at the Women's Hosital. 

She said: "Brittle bone disease (osteogenesis imperfecta, or OI) is an inherited condition where the bones of the baby are extremely fragile and prone to breaking. Sometimes the baby’s bones can break while inside the womb. I’ve never cared for a baby with OI before, I was also quite new in my role when Harper was on the unit so it was definitely a first for me.

"Caring for Harper generally came with some differences; we helped Harpers Mum to make small adjustments with feeding, burping and nappy changing. For example, you couldn’t pat her back to burp her, she had to be gently rocked, forward and back, side to side. Harpers Mum did really well with these adjustments and was a pro in no time!

 

"I was quite new in my role at the time, so to know that Haley still thinks of our interactions and how this has impacted her experience with us is very heartwarming. It is a reminder to me and my colleagues how much our job impacts the lives of families.”

 

Harper, who is now three years old, is doing very well according to her Mum.  
 
Haley commented: “Harper is absolutely thriving, she hasn't broken any bones since she was six months old, she’s your typical three-year-old child. 
“We have regular hospital appointments at Birmingham Children’s Hospital now, and they help us with all sorts of things, and I’ve met other Mums in a group for other mums who've been in neonatal, which has been really supportive.”