Betty’s Story
Betty Batt’s battle to survive began the moment she was born. Betty came into the world over 4 months early and weighed only 650 grams. She was very fragile and very sick. Because of her extreme prematurity she needed neonatal intensive care at Liverpool Women’s Hospital where her immature lungs were supported by a ventilator.
Betty was so poorly that her bowel perforated in two places. She was now critically ill and was whisked over to Alder Hey by ambulance for emergency surgery; the first of many such visits. Sections of Betty’s bowels were removed, but because she was so unwell it was not safe to join the bowel back together. This meant that Betty had stomas formed (the bowel ends being brought out on the surface of the stomach).
Betty had a rocky time after surgery. She suffered many infections, and her times off the ventilator never seemed to last long. She needed intravenous feed directly into her bloodstream and couldn’t even have specialised premature baby milk. Betty’s family began to lose count of how many blood transfusions, blood cultures and lumbar punctures Betty had. Her liver was affected badly by the intravenous feeds, so even though she was still very small she came back to Alder Hey for an operation to reverse her stomas and join her bowel back together.
But Betty’s struggle didn’t end there. On 1st February 2018 Betty left her little ‘home’ and Liverpool Women’s NICU family (amazing nurses, doctors and friends), to begin the next stage of her journey at Alder Hey Children’s Hospital. A couple of weeks later and Betty was rushed to theatre for an emergency tracheostomy after she suddenly stopped breathing. Betty astounded her parents yet again and bounced right back.
Determined to reunite their family and bring Betty home to be with her brother and sister, Stanley and Martha, Betty’s parents, helped by the dedicated team of professionals at Alder Hey, trained as quickly as they could to have the knowledge and skills to deal with her tracheostomy and other medical needs.
Betty finally went home for the first time after 13 months in hospital. Betty’s dad, Phil, said “Betty is just amazing. She is the most delightful, placid and brave little girl. A nurse once said to us, ‘Betty brings out the best in people’.
The new enhancements to the neonatal ward aim to make Alder Hey feel like a home from home for families like Bettie’s who have to spend a lot of time at Alder Hey. Being close to your new-born in an environment you feel comfortable in, is really important for bonding and making a new baby feel safe. This in turn helps with their recovery.
Phil continued “Betty’s journey will continue and the remarkable NHS that saved her countless times will continue on this road with her. Betty is our little miracle and no matter what comes we will all continue to love her with everything we have and with utter joy and immense gratitude to those that never gave up on her and gave us this most precious gift .....”
Betty’s Story – A letter from Betty’s Mum
Our 4-year-old daughter Betty made an impressive entrance into the world at just 23 weeks into my pregnancy weighing just 650g. Because she was so premature, she needed neonatal intensive care where her tiny lungs were supported by a ventilator. Betty needed care at both Alder Hey Children’s Hospital and at Liverpool Women’s Intensive Care Unit.
Betty’s journey has been extremely difficult. She has fought sepsis, numerous infections and required multiple surgeries. Perforations in Betty’s bowel meant she needed emergency surgery at just 5 weeks old - before she was even supposed to be born!
This meant we had to take the most terrifying journey between the two hospitals more times than I can even remember, knowing that each journey with our fragile baby girl could be the last. I would hold my breath as our tiny baby was transported between hospitals to get the care and treatment she needed.
The new Surgical Neonatal Unit at Alder Hey will take away the worrying transfers between hospitals and bring family-centred care under one roof. I can’t even start to explain the difference that will make to mums like me.
The teams at Alder Hey and Liverpool Women’s Hospital are angels and have given us the greatest gift in Betty, but we needed help from both hospitals to save her life. During her first critical care transfer to Alder Hey, Betty was only 800g.
When we met her first surgeon, Mr Bailey, all I could look at was his hands – they were bigger than our baby and I just didn’t know how it was possible to do what was needed for Betty. But they did.
Every single moment of Betty’s life is precious and during the toughest times we knew they could be the last moments. Being together as a family is everything in times like these. We were so aware of how vulnerable her precious life was as we had already lost our son George. He was born at just 22 weeks and we only had two hours to make memories with him. For some families, those memories are all you have so they really mean everything.
We know that Alder Hey and the Women’s have the experts. Betty is proof of that! Now they need a home together for families like ours. The new unit will provide that, keeping families close together and the experts on hand.
For Betty’s older siblings, Stanley and Martha, being separated as a family was extremely hard. We were travelling every day between our home and both hospitals and all the children were very involved in the whole process. We did make amazing memories – like when the staff safely bundled up our tiny baby into a “Betty Burrito” so that Martha and Stanley could hold her for the first time!
Living for a year on an intensive care unit is like stepping into another world – it’s impossible to explain and there is nothing that can prepare you. The thoughtful plans for the new Neonatal Unit at Alder Hey have been developed with input from parents of neonatal babies and it will make such a huge difference to the experiences of families like ours in the future. The new Surgical Neonatal Ward will help more families like ours stay with their tiny babies during the most critical and scary of times.
By supporting Alder Hey’s Neonatal Appeal, you can make it possible for families to be together and in the safest of hands – not just for an hour, but every day that their baby needs neonatal intensive care.
Karen
