Mum raising funds to help fight rare condition
by MARY MAGEE
Daughter Hannah and mum Julie Ann Ferguson, from Lower Ballinderry, are organising a sponsored walk at Lady Dixon Park. US3411-524cd
THE MOTHER of a baby born with no heartbeat and without any blood is to hold a special fundraising event to highlight the condition that almost killed her.
Julie Ann Ferguson's daughter Hannah, who is now two, died during birth and had to be resuscitated after Julie-Anne suffered the rare disorder vasa previa which can cause a new born baby to lose all its blood in minutes.
"Hannah is a true miracle and we are so very blessed to have her with
us," said Julie-Ann, from Lower
Ballinderry. Now she wants to raise awareness of the condition which, if diagnosed before birth, nearly always leads to the baby surviving.
Julie-Ann was overdue and booked in for an induction in November 2009 at the Lagan Valley Hospital. When her waters broke blood was discovered.
She was taken to the labour ward and because the baby's heartbeat was so faint, the consultant decided an emergency c section was needed.
Hannah was born weighing 7lb 15.5oz with no heartbeat because she had
lost all her blood.
The doctors worked for some time to resuscitate her and after being given a full blood transfusion, she was taken to the Ulster Hospital Neo Natal Unit. There doctors gave her more blood and repaired her lung which had collapsed. She was then transferred to the Royal Maternity Neo Natal Intensive Care Unit.
Julie Ann was warned things were not good.
"I will never forget the look on the doctor's face," she said. "She told us that our baby girl was very poorly and that we should call our family and go immediately to the Royal to say our goodbyes.
"The feeling when I heard those words will stay with me forever. The doctor asked if we were going to give her a name and I automatically said Hannah — because of its meaning - Grace of God.
"I was brought in to see Hannah in my bed. She was in an incubator, hooked up to a ventilator and lots of wires everywhere. She was on drugs to stop her fitting. I was just crying uncontrollably wondering how this could happen. She was by far the biggest baby in the ICU yet we were told she was by far the sickest.
"She had been placed on a cooling mat. The aim of this was to make her body so cold that the brain could not react, or at best limit the damage caused due to the lack of oxygen she had suffered. She was to remain cooled for 72 hours and then gradually warmed again."
The next 48 hours were critical if Hannah was to survive.
"We were told again and again just how poorly she was," said Julie-Ann.
"The next day, it was explained to me about vasa previa and how, because this had gone undiagnosed, it had been the cause of the complications with Hannah's birth.
"Vasa previa meant that the blood vessels in the umbilical cord were over the cervix, so when my membranes ruptured so did the blood vessels carrying blood to my unborn child.
"As she was losing blood, her heart rate decreased and she was being deprived of oxygen. Effectively Hannah was bleeding to death."
But Hannah proved to be a fighter from the second she was born. A few days she was able to breathe without a ventilator. She had also been having some seizures but was later taken off the drugs and the monitor.
The following week Julie-Ann was given the all clear to hold her baby girl for the first time.
Hannah had an MRI scan and Julie-Ann expected to be told their daughter would be severely physically and mentally disabled but miraculously, the scan came back normal. After almost a fortnight in hospital Hannah returned to her home in Ballinderry.
"Anyone who meets Hannah is truly amazed at her story; she has been described as a miracle by every medical professional we have seen" said her mum.
"Looking back, I think everything happens for a reason and someone must have been looking down on us. I am incredibly lucky that I was in such good hands at the Lagan Valley Hospital on the day of November 20 2009 and that Hannah received such wonderful medical attention following her traumatic birth.
"If I had known of vasa previa and the devastating effects, I would have requested to be scanned for it during my pregnancy. Such a simple procedure can save a perfectly healthy baby's life. I would never want any family to go through what we have. The outcomes are very rarely as good as Hannah's.
"For a long time very little was known about this devastating condition. In our search for information about vasa previa, we found the International Vasa Previa Foundation (IVPF) which is the Dilly organisation dedicated to saving infant lives by raising awareness of a condition.
"Foundation research and volunteers are helping to spread the knowledge about conditions that have the potential to develop into vasa previa. With the technology currently available babies can be prenatally diagnosed with vasa previa and saved by C-section.
"But there is still so much to be done. Many times doctors don't follow up women presenting with these conditions and lose the opportunity to diagnose an almost certain killer. The IVPF is striving to make vasa previa as well known as any other medical condition."
Julie-Anne is planning to raise money for the International Vasa Previa Foundation through a 5k walk on October 2 at Lady Dixon Park at 2pm. You can register to walk at SophiesWalk. org/walk or contact Walk Captain Julie-Ann Ferguson at Julz13@sky.com or 07897 391514