Uncharted Waters – Parental Intuition in the Pandemic

In the unknowns of a global pandemic, we parents find ourselves in uncharted waters, with everyone doing their best to keep their own ship afloat with no map or guidance on the best way forward.

For my partner and I, however, the waters we’ve sailed have been rougher than most, as we nearly lost our newborn to a rare bacterial infection – Scalded Skin Syndrome – when he was just 13 days old. This is our story.

---

According to Healthline.com: ‘Staphylococcal scalded skin syndrome (SSSS) is a serious skin infection caused by the bacterium Staphylococcus aureus. This bacterium produces an exfoliative toxin that causes the outer layers of skin to blister and peel, as if they’ve been doused with a hot liquid.’

As Coronavirus began to spread around the world, just before lockdown in the UK, we mistook the first signs of our baby’s infection as our accidently catching his umbilical cord on his nappy, leaving a small circle of raw, red skin. The midwife agreed with our theory, recommending that we air it out. Two days later, the raw skin had spread across his whole lower stomach from hip to hip.

Although his temperature was fine, he was happy within himself and had no change in his appetite, our intuition told us something was wrong.

Like all new parents, we didn’t want to overreact. A&E and the GP practice were now scary places to take a newborn with the uncertainty of whether Coronavirus had reached our shores. I called the health visitor who advised an emergency visit to the GP. The GP then gave us a letter to give to the A&E desk, and within 5 minutes of arriving his skin began to shed.

Four hours later, he had lost 80%, was hooked up to an IV and was being referred to Birmingham Children’s Hospital which specialised in burns. Plastic surgeons, burns teams, consultants and general nurses gathered and asked us the same questions every 30 minutes or so, some taking photos and making notes as they’d never heard of or seen the disease before. Without his top layer of skin, he was quickly losing heat.

With his pain mounting, we needed to transfer him by ambulance with minimal irritation to his skin, so I was asked to consent to paralysing his muscles and putting him to sleep on a ventilator. I was scared that his small body wouldn’t remember how to breathe for itself, but trusted the doctors and gave my consent.

The paramedics carefully transferred his drips and ventilator to their portable units before whisking him away into the night.

We were reunited 1.5 hours later in Intensive Care. The burns team arrived around 1:30am to assess and re-dress his tiny body. Thankfully, a charity at the children’s hospital provides parent rooms, so we had a bed to sleep in.

He spent a total of 5 days in Intensive Care on a ventilator. The hospital itself was eerily quiet as all scheduled operations had been cancelled to make beds available for incoming Covid19 patients.

As a new mum, I had to lock myself away and pump for a few hours each day, which only added to our sense of isolation. Unsurprisingly, this time away from nursing and the stress of the situation started to diminish my milk supply.

Having beaten the infection, we were transferred from ICU to the burns ward, where we were given a room for our little guy’s skin to regrow. The room had to stay between 26 – 29ºC to prevent his new skin from drying out, and we were now able to carefully hold him to nurse and comfort. Not being in ICU meant that I had to stay with him 24/7, sleeping on a pull-out bed that was kindly remade each day. I breastfed as much as I could, topping him up with my expressed milk from the week before that the team had stored in their freezer. But after a few days, we had to start supplementing with formula to ensure he had enough strength to recover.

We couldn’t believe how quickly his new skin grew back. The burnt skin was in fact a protective layer for the new skin growing underneath. Eventually this flaked away, revealing beautiful pink skin beneath. The team told us that because it was just the top layer of skin, he was likely to make a full recovery.

The nurses were incredible, particularly Paige and Sam. They even took one of the night feeds for me so I could get more than 2 hours sleep. They didn’t know us, they didn’t owe us anything, but they all went out of their way to make sure we were as comfortable as possible. Our NHS really are angels.

A few days before we were released, the lockdown was enforced in the UK. Being confined to my baby’s room for 20+ hours a day was mentally challenging, so the thought of our post-hospital lockdown life including multiple rooms in our house and a garden sounded heavenly.

In total, we were in hospital for around 2 weeks. The consultants discharged us a few days earlier than they would have perhaps done in normal circumstances, giving us the final doses of medication to take away. With cases of Covid19 now increasing and the first patient arriving at Intensive Care, it was safer for us to isolate from home.

My baby is now 10 weeks old and his new skin has completely re-grown. He’s made up the weight he lost in hospital and you wouldn’t know anything happened to him. For us, it seems like a bad dream. I think that’s the adrenaline, resilient fight-or-flight response that we have as parents to do what we need to protect our children.

The whole experience has changed my personal outlook on the lockdown, as it’s made me even more grateful for good health, freedom to walk around the park each day and being at home with my family. My thoughts and prayers go to those who have lost jobs, livelihoods or family members to the pandemic. We will all come through this with our own wounds and tales to tell. My hope for the world is that we can somehow find some positives and come out of this stronger and united.

---