THE tragic loss of a child has launched Comber couple Amy and Kelly Rowan into a full throttle campaign to raise funds for Belfast’s Paediatric Intensive Care Unit (PICU) at the Royal Children’s Hospital.
Born on March 6 this year, baby Bella fought through multiple challenges until in August he succumbed after battling throughout her short life.
Amy and Kelly have now set up the charity ‘Bella’s Journey’ to commemorate their daughter, and raise funds for equipment at the PICU.
The remarkable battle for life that Bella showed came after the lesbian couple had themselves battled to be able to have a child. Fertilisation treatments are not available to lesbian, bisexual or transgender couples in Northern Ireland, although they can be accessed across the rest of the UK.
Amy said: “We were actually really lucky, after we decided we were ready to have our first child, after only two attempts at insemination over three months I found out I was pregnant.”
On March 6, 2017 the couple’s lives were thrown into a whirlwind of joy when their 5lbs 5oz little daughter Bella was born via caesarean section at the Royal Victoria Hospital for Sick Children.
Sadly for Amy and Kelly the ecstasy of finally having their first child was masking a bitter fear having been told by doctor’s during their 20 week scan that Bella’s journey was not going to be an easy one.
Kelly explained: “We went for the scan on my 30th birthday, we were told that Bella had a retracting chin which they called Pierre Robin syndrome and her right leg was missing her fibula bone, meaning her leg was turning in. We had no idea what this meant at the time even after hours of research and countless appointments at the foetal medicine clinic.”
After 37 weeks and 5 days baby Bella was born.
“When Bella was born we only got to see her over a screen, she let out a faint cry and then there was silence,” said Amy, adding: “The doctor’s rushed her out of the room to the Neonatal Intensive Care Unit where she needed to be intubated as she couldn’t breathe on her own. Later that night Kelly was allowed to go and see her but I didn’t get seeing her until the next day. It was another 14 days before we got to hold her.”
Bella spent 2 weeks in the NICU where doctors began genetics testing before she was transferred to the Paediatric Intensive Care Unit.
Amy said: “When Bella was moved to the PICU she had a tracheostomy for her extremely narrow upper airways and a harness placed on her hips as they were dislocated.
“Along with the doctors we were confident that Bella was coming on leaps and bounds, we were attending discharge meetings and being trained on how to care for Bella at home.”
Months passed and the couple made their way to the hospital every morning, only returning home in the evening when their little girl was safely tucked up for her night sleep in the care of the nursing team.
Kelly praised the staff in the PICU: “As much as you never want your child to be in the ICU, if they need to be this is the best place for them. They go above and beyond, for your child and for you as a parent. There are no words we can give to describe how amazing they are.”
It took four months before Amy and Kelly heard that Bella was diagnosed with a severe form of Campomelic Dysplasia which had caused her skeletal abnormalities. Around the same time Bella contracted multiple infections meaning doctors were forced to place her on an oscillator which is a higher frequency ventilator.
With the hope of having their little girl home for their first Christmas together the couple were devastated when they got the news they had hoped they would never hear.
“The consultant called us in when Bella had been on the oscillator for over a month which they said was a really long time, she said that they were doing so much but nothing was helping and they were going to start looking at end of life care. It was just surreal, nauseating and we were in complete shock.”
During her last few days of life Bella continued to bring joy to her family as Kelly explained: “The nurses were fantastic, they had different crafts for us to make that we could keep as memories of Bella.
“The staff went out of their way to let us hold Bella even though it’s unheard of that a baby on an oscillator is held, that was a highlight for us, that we got to hold her and she knew we were holding her.”
Amy with Bella
When Bella passed away on August 29, 2017 it was ultimately because her little lungs had not developed. The couple’s lives would never be the same.
Kelly said: “It’s just the worst experience of your life but you’re also happy that your child is no longer suffering.”
Speaking of Bella’s heart breaking journey home Amy: “We took Bella home in the car with us, I held her on my knee and we brought her to the funeral directors. The next day Bella got to come home and spend the night in her bedroom.”
With Baby Bella cemented into their hearts forever the inspirational couple are asking for your support to keep their little girls memory alive.
The “Bella’s Journey” fund has been set up to raise at least £15,000 towards a piece of equipment with a plaque in memory of Bella in the PICU.
Amy summed up the cause: “Your donation will help Bella’s Journey to support Doctors and Nurses in the PICU to continue to deliver the world class care they gave our daughter.”
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