Skye Ieysha (and sister Klaire) Horner: 19 days, 12 and 20 months
Approximately 40,000 babies are admitted to Special Care Nurseries and Neonatal Intensive Care Units each year in Australia. Of those 21,000 babies born early 6000 babies will require critical life support and intensive care.
National Premmie Day - July 25th 2008 is the day to celebrate all Little Aussie Battlers - our premature and seriously ill infants as well as those special babies who did not survive their journey.
The day coincides with Respiratory Syncytial Virus (RSV) season. RSV is a common virus that causes cold like symptoms but for prematurely born and seriously ill infants, RSV is a serious health threat often resulting in re-hospitalisation or forced isolation to families.
This story is one of premature birth and RSV hospitalisation. It is the story of a tiny girl's strength and fight for life. Skye was born at St. George Hospital in Kogarah, Sydney, at 23 weeks gestation and weighed just 635 grams. She was transferred to Royal Prince Alfred Hospital NICU in Camperdown in the first few hours of her life. Her mother Rebekah was in hospital at St. George until they found a bed for her at RPA, which wasn't for two and a half days after Skye's birth.
Rebekah recalls how critical her daughter's condition was, "I was not given much hope as to her survival and quality of life even if she did survive."
Skye had many health problems due to her premature birth. These included chronic lung disease, 2 grade one infections in her lungs within the first month of life, 1 minor brain bleed, Retinopathy of Prematurity level 1 in her left eye and level 2 in her right, PDA closed through surgery, and small veins which made access for life-saving treatment extremely difficult resulting in a central line being inserted to make administering medicine and necessary drugs much easier.
So many threats to her life, but Skye fought through them all. Being discharged from hospital without her baby was heartbreaking for Rebekah, "When I was told I had to go home, I was devastated. I missed my little girl at home and wanted to get back to her as soon as I could, but was also feeling like I had to be right by Skye's bed for the entire time she was in hospital."
Rebekah was faced with the challenge of juggling day-to-day life and being near her daughter who she desperately wished she could take home.
"I expressed my milk for her 6-8 times a day and continued this through her long stay in hospital. It was the one thing that kept me bound to my tiny, miracle, baby girl and kept up my morale through the entire ordeal. As well as being able to hold her almost every day, at least once, after almost two months of her stay. Back and forth from home, expressing, getting my five year old to and from pre-school, spending hours by Skye's bed, travelling to and from Tamworth to pick my son up for the holidays, eating, sleeping and commuting by public transport - it was unbelievably stressful and draining. But more than worth it in the end."
Skye was in hospital for four and a half months and was transferred back to St. George hospital for the last week and a half of her stay in Special Care, where Rebekah was able to room in with her for two days before going home. Skye's discharge weight was 2.41kgs and Rebekah was ecstatic when given the all-clear to finally take her baby home!
Skye was home for almost seven and a half months, hardly a sniffle in the house all winter and Rebekah assumed they had survived the cold months unscathed. However, Klaire (Skye's big sister) got the flu from pre-school and Rebekah started to feel uneasy. A week later Rebakah came down with it. Then Skye got sniffley.
Rebekah recalls the details of the illness that almost took her daughter's life. "Skye wasn't sleeping so well, but put it down to a stuffy nose. On Monday, I took Klaire to pre-school and went to see my GP, to make sure everything was okay. My GP gave me some anti-biotics for Skye and told me we would all be fine. By the next morning, Skye was hardly moving. She had lost all muscle tone. We took her straight to the emergency room at St. George. Within 2 hours she was intubated and transferred to Sydney Children's hospital, at Randwick for specialised treatment. She was ventilated and heavily medicated, so she couldn't move and I was beside myself! Skye had Respiratory Syncytial Virus (RSV). I was told that I would lose her. I couldn't believe after all that she had been through, she may not make it through this."
After a few hours Skye was put onto a high frequency ventilator to try to loosen the infection in her lungs. After a week and seeing no improvement, the doctors suggested ECMO to try and increase her chances of survival. In intensive care medicine, Extracorporeal Membrane Oxygenation (ECMO) is a way of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased that they can no longer serve their function. An ECMO machine is similar to a heart-lung machine. But when told it may only increase her chances by 1 or 2 percent and could leave her severely brain damaged, Rebekah refused.
Rebekah clung to the hope that her little girl was strong enough to pull through "No matter what, I kept expressing milk for her and held strong to my belief that she was such a little fighter, that she would get through this, as she had overcome so much already in her short life."
Rebekah's five year old was staying with her Mum for most of Skye's hospitalisation and she missed her terribly. "I saw her a few times and spoke to her on the phone everyday, but it wasn't nearly enough. I wasn't able to sleep very well at night and rarely got a good night's sleep. Life had pulled a fast one on us. I spent the majority of my day next to Skye's bed. I did plenty of crying."
The staff told Rebekah to prepare for at least a three month stay at the hospital. Skye would miss her first birthday and Christmas at home and they wouldn't be able to spend it as a family.
On day 20 of being on high frequency ventilation, the doctor tried Skye on a normal ventilator. Within 24 hours she graduated to C-PAP and onto nasal prongs. Just over a week later she was out of ICU and on the ward. By week 6 of her stay, Skye came off the drip, back to breastfeeding and solids, and off oxygen.
"We were on the ward for about 2 weeks and then one morning her paediatrician walked in and asked if we were ready to go home!"
Skye was home before November, and before her 1st birthday. Rebekah is in awe of her little fighter, "Skye is a miracle. She has overcome things that most adults couldn't survive. Skye is bright-eyed and bushy-tailed everyday. She is developing wonderfully, even for her actual age and is still breast fed at 21 months. She has a very healthy appetite, loves her food and lets me know when she is hungry, by licking her lips. She knows that she is loved and it is a rarity to see her without a smile, followed by a cheeky giggle.
My perspective on life has completely changed. I am much stronger and wiser as a result of experiencing the amazing world of premature babies. To all the staff members of the hospitals who have made it possible for Skye to be with us today, we are eternally grateful to you."
For more information on National Premmie Day and RSV risks, symptoms and prevention, visit www.prembaby.org.au .
To dicuss this story or your experience, head to the Babies Born Early forum.
