Mother running for the neonatal unit that saved her baby’s life
Southampton based Amy Daniels and her husband Mark had an unexpected Christmas present when their baby boy arrived prematurely on 17 December 2013, at 24 weeks and 3 days gestation.
William was born weighing 1lb 6oz (745g), had red, transparent skin and needed to be resuscitated. After a brief look at their son, he was taken straight to the neonatal unit where he spent the following three and a half months.
During this time, William endured more than most of us would in a lifetime but it was thanks to the outstanding level of care on the neonatal unit that William was able to overcome his tough start in life.
To show her appreciation for the neonatal unit at the Princess Anne Hospital in Southampton, Amy will be running the Great South Run this October with all donations going to the unit to help other babies, like William, who were born too soon.
Amy explains: “William is now nine months old and happily settled at home, however there were times when this seemed a lifetime away.”
“I’ll never forget the first time Mark and I saw William on the unit. I cried. Nothing prepared me to see my tiny baby boy in an incubator, connected to numerous wires with cannulas and long lines infusing him with antibiotics, nutrition and morphine. All of this to keep him alive while his eyes were still fused shut from being born so prematurely. Our tiny little boy had to cope with so much when his body just wasn’t ready. We were his Mum and Dad but we felt so helpless.”
“The first few hours and days were a blur. I think we were both still struggling to come to terms with the fact we had a baby when I should still have been pregnant! It felt surreal to have given birth but to not have William at home with us like we had imagined. However, we quickly realised nothing would be as we had expected.”
“Within his first 24 hours, William suffered a grade I bleed on the brain, a common occurrence in premature babies. Over the following weeks we thankfully learnt this had not caused any long term damage. However, while we waited for this news, William’s left and right lung collapsed within days as they were not fully developed at his gestation. He also suffered a perforated oesophagus delaying his start on breast milk, required numerous blood transfusions and had several treatments of phototherapy to overcome jaundice.”
“It was an incredibly difficult time but compounded because it was Christmas. It saddened me to think of William alone in hospital. He wasn’t alone though, the nurses made sure it was an extra special Christmas for everyone. Mark and I received a card with William’s hand and foot prints in, and William had a stocking and a visit from Father Christmas!”
“When William was two weeks old we knew something serious was wrong. His stomach was distended and had started to turn black. The following day the discolouration had spread to his chest and back. He was fighting for his life.”
“The clinical team suspected a perforation in his bowel however the numerous x-rays proved inconclusive. On day 16, it was decided that an exploratory laparotomy would be performed. At this point William only weighed 1lb 9oz (860g). We were told the operation carried a big risk but we also knew doing nothing carried a greater risk.”
“I can’t convey our relief when the surgical consultant called to tell us the operation had gone well. They had found and repaired a hole but to enable his bowel to recover had made an ileostomy which meant we had to apply stoma bags for the immediate future.”
“William started to grow stronger and the discolouration and swelling started to recede. He’d done it! However, the relief was short lived when we were told his lungs were filled with fluid and showed scarring, they were much worse than either of us realised until we saw the x-ray.”
“We were advised that a course of DART steroids would be most effective to reduce the inflammation. Within a few days the results were clear to see; his oxygen requirement was coming down as his lungs were improving. It was during this time, only 14 days after his first operation that he would have his second, a PDA ligation to close the duct above his heart.”
“The operation was a success and within a few days, William was extubated on to high flow, a less aggressive form of delivering oxygen. William was moved from the intensive care nursery into high dependency. We felt certain the worst was over, yet only a few weeks later we were told, following a routine weekly eye check, that the blood vessels in William’s eyes had deteriorated and required urgent treatment.”
“We were told he had AP-ROP, the most severe case of retinopathy of prematurity in the inner zone of his eyes. Due to the severity and location of the condition, we were given the option to have laser eye surgery (the standard treatment) or a newer, less researched treatment of Avastin injections. Like everything, both treatments had there pros and cons however we needed to decide quickly as William needed treatment within 24 hours. We opted for the injections as he would have lost extensive peripheral vision with laser surgery but it wasn’t an easy decision due to the uncertainty surrounding the long term effects of the injections.”
“Over the following weeks William progressed well, his oxygen requirement was reducing and eventually he was moved to the special care baby unit.”
“William was discharged in April, one week after his due date. We returned to Southampton General Hospital on 14 May for William to have his third operation, this time a planned procedure to reverse his ileostomy.”
“William is still on a small amount of oxygen at home and has several routine appointments but otherwise is a normal, happy and playful little boy.”
“Nothing can prepare you for having a premature baby. Each premature baby’s journey is so different but what is certain is that without specialist units like the neonatal unit at the Princess Anne Hospital, these babies wouldn’t survive.”
“The care William received was exceptional and he is just one of the hundreds of babies the neonatal unit cares for each year.”
“I had seen the Southampton Hospital Charity signs displayed around the hospital so it was an obvious choice to run for the charity at the Great South Run this October. All of the money I raise will go to the neonatal unit.”
Please sponsor me here: http://uk.virginmoneygiving.com/AmyDanielsFundraising
“Mark and I are eternally grateful to all of the staff involved in William’s care from the moment he was born to the moment he was discharged. They do such an incredible job. If it wasn’t for them he wouldn’t be here today. I hope the money I raise will go some way to show my thanks for giving William the best start in the most challenging few months of his life.”
Southampton Hospital Charity still has places available for the Great South Run, so if you are a runner, or if you have been inspired like Amy to run for a cause close to your heart , then please contact the charity office on 023 8120 8881 or email@example.com