How Neonatal Care Gave Me Strength as a Parentby Layla De Freitas
Our experience in Neonatal Intensive Care, although long and emotional, was what shaped us into the parents we are today.
My twin daughters, Lily and Amelia, were born on 18 July 2020 at 32 weeks old weighing 1354g (Lily) and 910g (Amelia).
During the very early days of Amelia’s life, the doctors made us aware of a heart murmur that we believed would shortly close, unfortunately, this did not happen. It very quickly became known to us that Amelia had a Patent ductus arteriosus (PDA), usually, a PDA will shrink and close on its own - this wasn't the case for Amelia. As a result, it was causing extra blood to flow to the lungs causing Amelia to overwork and retain an excessive amount of fluid. She was very unwell.
We hoped Amelia would gain weight and be able to manage the extra blood flow - she battled long hard between trying to gain weight and being on medicine that released the overflow of fluid, including her nutrients. The fantastic team at our local hospital did all they could to improve Amelia’s conditions, but it became clear she needed very specialist care which would involve having the PDA surgically closed in an operation.
They managed Amelia in her unstable condition for 10 weeks before making the decision to move to Great Ormond Street Hospital (GOSH), there was immense hesitation as babies of Amelia's size are not usually accepted for the surgery.
I attended GOSH on my own with Amelia whilst my husband stayed home to be with Lily and with it being a national lockdown, other family members were not allowed to be with me. The staff were incredible, the team of nurses on Bear ward (cardiac) made me feel at ease (as best as they could) and provided a comfort my family could not. They were there to put their arms around me as I left Amelia on an adult-size theatre bed for surgery, offered to stay with me and make me a hot drink to calm my nerves.
The uncertainty of how things were going to unfold from day to day was extremely difficult. Some days I could put the front on that everything was going to be OK, but deep down I really wasn’t sure. I had twins. I was stretched between being a new mum to Lily at home, breastfeeding and providing her with all the love and attention I could whilst being with Amelia and doing the same for her too. Instead, I would express milk for Amelia to be tube-fed - I just couldn't be in two places at once. Mum guilt is a powerful emotion, during this time I constantly felt like I wasn't doing enough or splitting my time fairly something you never think you'll ever have to do when pregnant with twins. You just assume twins stay together at all times.
Amelia's surgery took place on World Heart Day - the windows outside of her bed were decorated with drawings and quotes from older children staying on the ward. It was breath-taking. As I arrived at GOSH on the morning of Amelia's surgery, greeted by the heartfelt display, it was the encouragement and hope I needed to know everything was going to be ok, despite the great risk involved in operating on a baby of Amelia's size and weight. She's a fighter and GOSH made sure I knew that.
Great Ormond Street Hospital is a special place. Every aspect of the hospital is designed to make patients and their families who suddenly find themselves enduring unimaginable difficulties feel welcome and safe. Amelia stayed at GOSH only for a short time following the successful closure of her PDA, during this time staff allowed me to be with Amelia day and night. GOSH provided me with accommodation in Grenville Street, only a short walk from the hospital, which put me at ease knowing I was only across the road should they need me overnight.
Her recovery was crazy, within hours of the surgery Amelia's health improved and her breathing immediately settled. Amelia has had no cardiac issues since and continues to thrive. She is a healthy and happy baby doing all the things you would expect a 7-month-old to do including keeping mummy and daddy awake all night!
Looking back on my time there, I remember sitting in the canteen (The Lagoon) at lunchtime shortly after receiving a phone call with the news Amelia's surgery had been successful, and being truly humbled by my surroundings. A hospital of the most highly skilled and talented doctors and nurses in the world treating very poorly children and babies, how privileged I was to be one of the parents knowing I was going home with my daughter as a result of their intervention. Even on the tough days when sleep deprivation is at an all-time high, I remember when I once feared I would be going home alone, I count my lucky stars every day and hold my girls tighter at every opportunity.
Having a baby (or two at the same time!) in NICU miraculously gives you more strength than you've ever thought you'll need, as parents when you find yourself in these situations in whatever capacity you're forced to love so much harder. It will test you and take you to places mentally you may never have been before. Be kind to yourself and stay strong, you might feel physically and emotionally drained, but they feel your comfort, warm cuddles and endless love.
Just like with Layla and her daughter Amelia, parents are currently bringing their children to GOSH under extraordinary circumstances.
Infection control restrictions only allow one carer per family to be in the hospital, and that one carer must be strong for a worried child who is being treated by people in masks and protective clothing. They also have to plan their travel and accommodation under the same lockdown rules as the rest of us.
Help GOSH deliver the practical and emotional support parents and families need by donating to GOSH Charity here.