‘CARE UNIT SAVED OUR BOYS’ LIVES’
Fifteen million babies are born prematurely every year, one million of whom won’t survive. A child arriving months before their due date can be a traumatic and distressing time. On World Prematurity Day, Sian Matheson shares her family’s emotional journey in neonatal care...
AS I washed my hands waiting to enter the neonatal intensive care unit (NICU), blue lights flashed on the ceiling as the emergency alarm rung out around me.
I froze as nursing staff ran towards the corner of the room where my twin boys were.
Crash team already at work, a nurse quickly spotted me and ushered me into a side room.
She told me not to panic as she went to find out what was going on.
She was only minutes, but it felt like hours until she returned. Oscar had managed to pull out his ventilation tube, meaning he was unable to breathe. But he was being reintubated and I was assured no lasting damage had been done. He was ok.
This is the emotional rollercoaster of life in neonatal intensive care.
Our twins had been born at 26+1 weeks via emergency C-section, Caleb weighing 900g and Oscar 910g.
In the delivery suite my husband Steve cut the umbilical cords. The boys were then put in plastic bags to keep their body heat stable (luckily, we’d been warned about this), then whisked away to NICU.
I was finally well enough to meet them at about 11pm that evening.
They were so, so tiny in their incubators that they didn’t even look like babies. They had wires and tubes everywhere attached to various machines.
The noise of the unit was deafening, all beeps and alarms.
The skin on their little bodies was so thin it was translucent. I felt helpless, terrified to touch them. I was also still in shock that our babies had arrived three months early, they weren’t even due until Christmas Eve.
The first days after they were born are pretty much a blur.
I recall hearing other new mums with their babies as I recovered in my room on the ward downstairs, all the time thinking of my tiny babies upstairs in the neonatal, lying there in their incubators. Would they even know me? My pregnancy had ended abruptly, we were certainly not prepared for their arrival, if I’d done something differently would they still be safe growing inside me? Are they capable of even surviving being so tiny? Obviously, my hormones – and tears – had kicked in, but my mind was on hyper-overdrive too.
Thankfully the nurses, doctors and consultants we met were just incredible.
Although it was still early days and tests were always ongoing, we met the twins’ consultants who would update us on what was happening.
Our sons had been born with holes in their hearts and underdeveloped organs, including lungs. It was too early to tell if there were any other complications other than being severely premature. Again, most of the early conversations are a blur to me, apart from one evening a consultant was telling us about the results of a brain scan.
He could see dark patches on both the boys’ scans, the likes of which he hadn’t seen before.
It didn’t sound good and he couldn’t give us any answers about the short term or what it could mean long term for our preemies.
There and then Steve and I made a pact: no Googling anything. We’d take things hour by hour and we wouldn’t worry until we needed to. But, naturally, it didn’t stop us worrying.
Ten days after their birth, I finally had my first cuddle with Oscar.
But he couldn’t settle on me so had to go back in his incubator after just 30 minutes. Not being able to comfort your own baby is pretty demoralising.
The next day I managed to have a cwtch with Caleb – he was the exact opposite and managed nearly two hours with me.
To this day Steve maintains that Caleb seemed a much more contented baby after that longed-for first cuddle. It didn’t stop him copying his brother by trying to give us a heart attack by pulling out his ventilation tube triggering the blue lights and alarm too, though!
I didn’t expect cuddles every day, we had to see if the boys were stable enough. Asking to hold your own child is an alien concept. In that early world of such uncertainty, it was a very good day indeed if we’d managed to have a cwtch with either of our sons.
But this is the life of a preemie and a preemie parent. The proverbial emotional rollercoaster, full of ups and downs.
One good day was indeed followed by a bad day; Caleb had developed a mystery infection.
He was struggling. We had a phone call at midnight that night to warn us he was not responding well to treatment, then another call at 5am.
The following evening his consultant said they were baffled and it was backs-to-the-wall time. There was another course of action they could try and if that didn’t work, he didn’t know what else they could do. We sat in the parents’ room and I sobbed my heart out.
After couple of dark, stressful days Caleb thankfully suddenly started to turn a corner.
We knew how sick our little man had been, how close we came to losing him. Much time later my husband told me the consultant said Caleb was the sickest baby on the unit at that point.
It’s not just those affected by prematurity, there are a lot of very ill babies in neonatal care, some of whom sadly never make it home to their families.
Each day we would walk past the end of treatment bell which long term NICU babies ring when they finally leave the unit, wondering if we would ever be lucky enough to ring it. Some days I couldn’t even look at it.
At home cards and presents had started to flood in. We didn’t open anything for around seven weeks, clothing gifts especially terrified me – what if our tiny preemies didn’t ever get to wear them?
Our family and friends were brilliant, especially helping out with
childcare for our older son Nate who was only 18 months old himself. They frequently asked how the boys were doing, but we rarely went into much detail, just replying “up and down” or “It’s been a good/bad day”.
Everyone meant well, but if we tried to explain there were always more questions. Quite simply we were exhausted, both mentally and physically, to go into too much detail and were trying to just get on with the situation and keep it as normal as possible for Nate.
Besides, they couldn’t possibly understand, unless they’d experienced long-term care in neonatal themselves.
The only people who could understand our situation were other parents with babies on the unit. It was helpful swapping stories with other mums in the breastfeeding room, uplifting to see a friendly face when you were having a low day. Being attached to breast pumps, like cows being milked whilst discussing your fears and hopes became a normal – and a welcome – part of the day.
Having a baby in NICU changes you. It’s a whole world in the hospital which the majority of new parents are blissfully unaware of. But it’s also the most incredible place with brilliant, caring nursing staff. They were almost like counsellors at times – there to chat, give you a hug or just pat you on the shoulder and leave you alone with your own thoughts. NICU staff became like adopted family. We literally saw these people day in, day out for months and spoke at all hours, telephoning in to check on the boys.
Despite our already being parents, the nurses had to teach us how to care for our preemies.
We were encouraged to change nappies (not an easy task when there are tubes and wires everywhere!), feed them via a tube, wash them and dress them when they were finally able to wear clothes – all normal, everyday stuff, you take for granted with a fullterm baby.
Even when the twins were ‘promoted’ to the high dependency unit, a few infection setbacks or after surgery – Caleb had eye surgery and both boys had hernia operations – would see them both revert back to intensive care for a short while.
After the first petrifying few weeks, ultimately it was a waiting game – waiting for Caleb and Oscar to grow, waiting for their organs to develop, waiting for them to be strong enough to come home. We lived for Sundays and Wednesdays – weigh nights, praying they’d packed on some valuable pounds.
As the weeks passed, the boys gradually moved on to different breathing apparatus, and we knew they would have to come home on oxygen support to help their chronic lung disease caused by severe prematurity, plus they were on various medications.
But preemies are tough, resilient little fighters. Their tiny bodies undergo blood tests and scans on a daily basis in a world where sepsis is just another infection and blood transfusions are the norm.
Today is World Prematurity Day and the Bliss charity is once again marking it with the #IWishIdKnown campaign. This time last year #IWishIdKnown everything would be ok. That our premature duo would now be chasing their big brother around the room.
To say we feel incredibly blessed is an understatement. The NICU team saved our boys’ lives, we are in no doubt about that. In fact, every person at UHW who looked after us throughout my pregnancy was amazing, especially as I’d been an inpatient for a week being monitored after one of my waters had broken. After a mammoth 124 days, we finally rang that bell twice to signal each of our sons going home. Saying “Ring this bell three times well, its toll to clearly say, you helped me grow it’s time to go, so I am on my way” is somewhat impossible through a flood of tears!
We could now start being a proper family of five – and the boys could finally see the world beyond the neonatal front door.
Caleb and Oscar celebrated their first birthday in September. They couldn’t have a big party due to coronavirus, but we made it as special as we could.
We are so proud of our little warriors and are still in awe of what they have overcome. They still have lots of hospital appointments to come including for their hearts and lungs, but that’s life after NICU for preemies.
We’ve been pretty much on our own lockdown since the boys came home in January. We didn’t want them picking up colds or infections and then ending up back in hospital, which is common for preterm babies. As it was, Caleb developed bronchiolitis and had to go back to UHW for a short stay in March, just before Covid-19 properly hit.
Such is the timing, our boys have yet to meet many family members or enjoyed normal coffee dates and cuddles with friends. It’s unfortunate but, ultimately, we don’t want to take unnecessary risks when our little men have spent so much of their short lives in hospital.
Having three children under three has certainly been challenging at times, especially during this pandemic, but we will be forever grateful to the incredible care we were shown by everyone at UHW and the brilliant outreach team who supported us after discharge.
Lockdowns have given us valuable family time which we missed out on for the first few months of our little miracles’ lives.
But this quality time would never have even been possible if it wasn’t for the dedication, love and care shown by our NHS neonatal superheroes.
November is Prematurity Awareness Month and today is World Prematurity Day. For help and support or to find out more information about prematurity visit Bliss at www.bliss.org.uk or UHW’s Neonatal charity Scips, which also has a donation page, at https://bit.ly/3nmBfNo