My pregnancy had gone smoothly but then Naila decided to arrive one week early. I had a rapid birth with Naila arriving still in her full water sack, which happens in less than one in 80,000 births. When the nurses at Darlington Hospital checked Naila, her oxygen saturation wasn’t correct and so she was immediately rushed to a specialist unit.
When my husband, Syed, and I saw Naila in an incubator, hooked up to lots of tubes, our hearts sank. The doctors suspected she had an enlarged heart, so she needed to be transferred by ambulance to the Freeman Hospital in Newcastle for scans. I discharged myself from the maternity ward and Syed drove us to the Freeman to be by Naila’s side.
The cardiologists at the Freeman diagnosed Naila with Tetralogy of Fallot, a form of congenital heart disease. She has a hole in the wall between the two lower chambers of her heart as well as a narrowing of the pulmonary valve and main pulmonary artery. This heart defect can reduce the oxygen levels in the blood that flows to the rest of the body. They told us she would need reconstructive heart surgery. After hearing this we felt like we’d been hit with a ton of bricks.
We were then told that her heart condition is associated with Down’s Syndrome, so the doctors would do some genetic testing. They also thought her intestines could be blocked. By this point neither of us could stand, we broke down crying in each other’s arms, uncertain of our daughter’s future.
“We were told about Crawford House by another charity, Tiny lives, who also offered us support at this time. It was like a weight had been lifted off our shoulders, knowing my husband would be staying nearby.”
The next morning, after a specialist confirmed the blockage in her intestines, Naila was transferred to PICU at the Royal Victoria Infirmary (RVI) in Newcastle. Syed and I followed in our car but the trauma of that journey, straight after giving birth, caused my stitches to burst. I required urgent pain relief. Upon arrival I was immediately admitted to the RVI’s maternity ward.
While Naila and I were on different wards, Syed was only allowed to see us during certain times due to Covid restrictions. With the hospital being so far from home in Darlington, around a 50-minute drive away, we thought he’d have to book a hotel. It’s so stressful to have to think about those little things when you don’t want to think about them. This was when we learned about Crawford House, The Sick Children’s Trust’s ‘Home from Home’. We were told about Crawford House by another charity, Tiny lives, who also offered us support at this time. It was like a weight had been lifted off our shoulders, knowing my husband would be staying nearby.
We were gobsmacked by the facilities at Crawford House. There was a beautiful family lounge where we could have bought our son, and although Covid restrictions meant siblings couldn’t stay in the house, it was nice to know other families in our position had access to this pre-covid and will do in the future. The house was clean, modern and there was even a fridge where we could store breast milk.
My husband stayed at Crawford House for ten nights while I recovered on the maternity ward and Naila received treatment in PICU. She was also diagnosed with Transient Abnormal Myelopoiesis, a bone marrow disorder associated with Down’s Syndrome, meaning her white blood cell count was high. Once the blockage in her intestines cleared and her other conditions could be monitored by weekly appointments at the Newcastle hospitals, we were able to go home.
The plan set by the Cardiologist was for Naila to reach 7kg in weight or get to seven months old, then she could have the heart surgery she needed. However, when she turned three and half months, a valve in her heart shrank and she needed emergency open heart surgery at the Freeman Hospital. When we got to the hospital it was reassuring knowing we didn’t have to worry about where we’d stay while Naila was in PICU. We knew The Sick Children’s Trust would look after us.
“It was amazing to have the opportunity to make friends with parents in similar situations, and a great comfort that I always had someone to walk back to Scott House with, especially on dark nights.”
I stayed at Scott House for nine nights, alongside my husband for three of those. As Muslims we pray five times a day, so it was great to have a quiet place to pray, read my Quran, reflect, and gather our spiritual feelings. Scott House was a safe haven for us, a place where we could cry, have private conversations and call our families.
Although we had to stick to social distancing rules, I was still able to meet other parents staying at Scott House and hear about what they were going through. It was amazing to have the opportunity to make friends with parents in similar situations, and a great comfort that I always had someone to walk back to Scott House with, especially on dark nights. As all the parents visiting their little ones in PICU would return to Scott House at a similar time, we would take the chance to catch up on the progress of our beautiful children, sharing well wishes and offering support to one another.
It was also comforting to have the support of the House Managers, who would always ask how Naila was doing and reassure me that everything would be okay. Scott House even had a garden space, where I could step outside and take a breather. I was also able to make use of the laundry room and the kitchen to heat up home cooked meals relatives had made.
After her heart surgery, Naila was supposed to be on a ventilator for around 48 hours. However, the collapse of her lungs resulted in Naila being ventilated for eight days. Once Naila’s heart was doing much better, she was able to come home.
Although Naila’s heart surgery went well, the doctors had to remove a valve that was too narrow. She’ll need a replacement valve in the future. We’re hoping she’ll get to adulthood before she needs surgery again, otherwise she’ll need a child’s valve fitted which will eventually need to be replaced.
Naila’s genetic testing also confirmed that she has Down’s Syndrome which the doctors were 95% sure she had with the majority of her conditions being linked to Down’s Syndrome, but she is now a year old and stronger than ever. She’s a happy baby, has learnt to crawl and is pulling herself up to stand by holding things. Her strength is inspiring.
We are so grateful for the support The Sick Children’s Trust gave to us while Naila was in hospital. They think of everything for you, which means you don’t have to worry about little day-to-day things and can concentrate on your child’s recovery.
To give back we have chosen The Sick Children’s Trust as one of our family charities for Sadaqah, a religious duty for Muslims to donate to those in need. We will donate regularly so more families like ours can have a comfortable place to stay close to their seriously ill child’s bedside.
Saima Amin, Naila Ahmed’s mum