Deanna and Ben Sigmund: Fully Committed Supporters and Volunteers
Since experiencing their neonatal journey detailed below, Deanna and Ben Sigmund have been incredible supporters in a number of different ways. From help with collections, sorting knitted items, media work for promotions – you name it, a request for help was never too much hassle. The Neonatal Trust are incredibly grateful for their wonderful support.
24 weeks, 715gms
We began our journey with the Wellington Neonatal Intensive Care Unit (NICU) at 6.46pm on Thursday 13 May 2010, when our son Cameron Michael Roy Sigmund was delivered by c-section at just 24 weeks. I was wheeled one way, and my husband Ben and Cameron went the other.
My first real memory of NICU, though blurry, was being wheeled through the double doors of the unit into what seemed like something out of Star Wars! There were bells, whistles and lights flashing everywhere, and amongst all this chaos in a clear plastic box was our son, our tiny perfectly formed baby boy fighting for his life. I knew he would be little but if you have never seen a baby that small, nothing really prepares you for that moment. In the days that followed we gradually understood the magnitude of just what a fight Cameron had on his hands.
There was constant care and monitoring for head bleeds, tubes for feeding and breathing, long lines leading from his leg to his heart for extra nutrients as well as IV lines for antibiotics and fluids. Ben and I felt so helpless, day in and day out. All we could do was change his nappy through a small porthole in the side of the plastic chamber that encased him. No cuddles or kisses, just our hands lightly cocooning his fragile transparent body whilst the hospital tried to mimic the conditions of him still being in the womb.
A week after Cameron was born, Ben had to make the gut wrenching decision to leave Cameron and me and get on a plane to South Africa where he would be representing New Zealand as an All White, competing for glory at the FIFA World Cup. This moment for Ben was very bittersweet. On the one hand he was leaving to follow his dream, competing at his chosen sport on the world stage, and on the other he was leaving his heart at home with Cameron who was seriously ill and had just as much chance of making it as he did of dying.
The weeks that followed Ben’s departure were full of emails, text messages and phone calls detailing Cameron’s progress, or lack of.
One of the defining moments and milestones in Cameron’s progression through NICU was heart surgery at just four and a half weeks old to close an open duct off the heart (known as a pda). After three courses of a drug to try and close the duct, the doctors decided it was more risky to not do the surgery than to proceed with it. I remember my phone call to Ben as if it were yesterday. And, after staring at the consent form for what seemed like an eternity, with a shaking hand, and tears rolling down my cheeks, I signed our beautiful baby boy away to have a surgery that could be lethal (worst case scenario).
The day of the surgery for both Ben and I was…….terrifying. How could something so little and fragile survive the trauma of heart surgery? We were beside ourselves trying not to think the worst but preparing for what could happen. For Ben there was no question, CAMERON was a fighter and he was going to keep fighting, just like he had done since birth. But for me, as I kissed my baby lightly on the forehead before he was taken away for surgery, I couldn’t help but savour the moment as it could be the last time I ever got to see him alive.
Cameron got through the surgery superbly, so well in fact that by the time we saw him, he had already progressed back into his little corner of Nursery F. I sent Ben a text with the news of Cameron’s triumph. He was over the moon, just relieved.
A few days after surgery, minor complications arose with the slight collapse of Cameron’s right lung. I rang Ben with the news and he was crushed – he felt so hopeless being so far away from home. This news affected Ben terribly so when Cameron lost the other lung overnight I didn’t tell him, which was hard as we have never had any secrets. It took a couple of days for Cameron to finally pick up after his complications but suddenly he seemed to do really well even showing signs of starting to fight his ventilator, indicating that just maybe he was nearly ready for the next step – a breathing mask known as CPAP.
Before we could blink, Cameron was struck down again with a mystery illness later confirmed to be a stomach/intestine bug called NECK (abbreviation of medical term). This is a simple stomach type bug that can be fatal in premature babies as it causes possible corrosion of the stomach or bowel wall if not treated quickly after detection. So for the next 10 days Cameron’s feeding was stopped and a liquid diet by IV was started along with yet another course of antibiotics. During this time Cameron dropped weight considerably, prompting intervention by doctors who put in another long line to deliver much needed nutrition.
The days that followed were full of tears and questions for the ever patient nurses and doctors as to why it was taking so long for Cameron to get better. It was during this time that I began to truly appreciate the hospital staff as day after day I found myself not only leaning on my family for support but also sourcing strength from those who spent 12 hours of the day or night caring for our most precious thing.
Finally things started looking up again, Cameron’s stomach bug was under control and the decision was made to move to CPAP. I remember this day clearly as, while this was a step forward, it devastated me at the same time. There was our beautiful son with a mask strapped so tightly to his wee face that his eyes and cheeks just bulged. How could this be a step forward, I remember saying. I finally made as much peace with the situation as I could and with the help of Cameron’s nurse got him out of his incubator for a much needed kangaroo cuddle, something I believe we both needed that day.
It never ceased to amaze me how obliging the nurses were when it came to helping parents create that bond that most parents with full term babies take for granted. I didn’t get to hold my son for the first time until he was around five weeks old, so every cuddle I got was so precious. The careful, almost choreographed, routine of removing Cameron from his incubator took the nursing staff not only time but a lot of patience and skill. Yet they never complained, it was never too much trouble.
The weeks ticked on and after six long weeks away, Ben was finally home! We hurried to the NICU where Ben was tearfully reunited with his son. As we sat together with Cameron in the partially lit room we began to talk about our journey so far and just how lucky we were to have Cameron. The weeks that had passed for us were rewarding, traumatic, exciting, gut-wrenching, sleepless, ecstatic, frustrating and yet full of so much joy, all at the same time if that is at all possible.
Cameron continued to grow from strength to strength finally being put on a Wellington CPAP. I had almost forgotten what his wee face looked like as it had been bound up so tight for so long. He was finally looking like a proper baby!!!!
The next step was moving out of his incubator into a heated cot. We were ecstatic to find on one of our many visits that Cameron overnight had made this progression, he had clothes on!! We couldn’t believe it, was this really our Cameron? We were so used to seeing him in just a nappy that this sight seemed so foreign.
Before we knew it, I was asked to begin rooming in at the hospital in order to prepare for getting home. The days and nights in the unit began blurring into one. The only thing that seemed to change was Cameron as he became more and more alert with each passing day.
After about 4 weeks rooming in, I was allowed to have Cameron room in with me. I was sooooooo excited!!! But it was an education let me tell you! I swear I was up all night checking on him every 2 seconds.
Between traveling with A-league soccer trips for the Wellington Phoenix, Ben would also juggle his time between training sessions to relieve me with Cameron. Those weeks living in at the hospital were tough but as a couple Ben and I made it work as best we could.
The days leading up to our departure were tough! The NICU had been our home for the last four and a half months. We’d gotten to know the doctors, nurses, administration staff and cleaners really well, and then there are the other parents taking the same, if not similar, journey as you are.
No words could ever sum up just how grateful Ben and I are for what the doctors, nurses and extended staff of the NICU did for us. They are all just such amazing people and we feel that both of us are all the better for this incredible experience, we see it as a remarkable gift that has changed us both for life.
We would like to give thanks to The Neonatal Trust for all the support they gave us at the hospital and also providing ongoing support and assistance when Cameron came home by the way of specialist nursing care.
After a lot of therapy, a nervous break down and a lot of convincing we decided to give Cameron another sibling. At 38 weeks, on 25 September 2013 Ashley Kate Sigmund was born weighing a healthy 3320gms compared with Cameron’s birth weight of just 715gms.