Our NICU experience – a dad’s story.

September is NICU awareness month, John Bell shares his experience of his son Thomas’s first few weeks.

I’ll never forget the day Thomas was born, Our oldest son, Daniel, was 4 when we decided it was time to give him an sibling. Alison got pregnant fairly quickly and we had no reason to think there would be any problems.

That was until Alison had a positioning scan at 35 weeks. I was home with Daniel when Alison went for her scan. The next thing she called me saying she was being transferred to hospital by ambulance and would be induced on arrival!

Panic set in – I was not ready for that! We called our friend who was going to look after Daniel and I went to the hospital. On my arrival everything happened in a blur. Alison was already being induced but suddenly they decided it was not going quick enough and that she needed an emergency C section. I remember Alison being raced to the operating room. I had medical scrubs thrown at me while Alison was being prepped, I got dressed and just remember praying please let them both be ok. The surgical team worked fast, the next thing this tiny bundle in a green blanket was being raced passed me. I froze, Alison screamed “GO WITH THE BABY!” So I ran with the nurse, and I watched our tiny baby being resuscitated. The doctors worked so hard and the room fell silent as they worked, or at least I think it was silent.

The next thing Thomas began to cry! The relief was instant and I went back to Alison who was crying, begging me to stay with Thomas and not let him go on his own. She was being wheeled through to recovery and Thomas was being taken to the NICU. I felt like I was being torn in two.

I followed Thomas, nobody spoke, I knew it was serious. This was not the joyous occasion we had envisioned, this was terrifying! Again the doctors worked with Thomas, the nurses worked around him and within about an hour I was sitting next to his incubator while all these machines beeped and flashed, he was hooked up to oxygen, wires, IV lines, drips.

When Thomas was 3 hours old, Alison was wheeled into the NICU, she was pale and shaking, I’ve never been more relieved to see her. A nurse asked if we would like to briefly hold Thomas, off course we did, but we where also in a state of shock. We both cried tears of relief and fear. The nurse took Thomas back again placed him back in his incubator. Alison and I were taken to her room, the midwife said I could stay overnight. But I couldn’t sleep. So I walked to the NICU.

I asked the nurse if I could just sit, I couldn’t stop watching him he was so small and I felt so helpless. Everyone says a father’s role is to protect their family. I couldn’t do anything other than sit and watch. The first 24 hours were tough and the doctors were concerned with how unwell Thomas was. I just remember them taking vial after vial of blood to test. Then there was talk of Down syndrome, some of the medical staff picked up on things, but other things didn’t seem to fit the typical characteristics of Down syndrome. So they arranged more blood tests.

When Thomas was 2 days old, he had what we thought was a routine scan on his heart, we didn’t expect any surprises as we’d been told throughout the pregnancy that his heart was ok. Suddenly the doctor announced he had a 9mm hole and a smaller 2mm hole in his heart. We were told he would need surgery to repair his heart. I just remember feeling crushed, the unfairness of it just seemed too cruel.

When Thomas was 5 days old we had the results of the blood test and his diagnosis of Down syndrome was confirmed. I just felt so sad for him. I wondered if there was something we could have done to prevent it. The next day, Thomas’ doctor sat with us and chatted about Down syndrome and was so positive in her attitude, she really helped us and calmed some of our concerns.

That conversation seemed to change everything. We had the diagnosis, there was no more uncertainty. We also had the diagnosis of his heart defect. We had to be strong for him and for Daniel and each other. Thomas was on oxygen and had a NG tube fitted to help with feeding. With machines still bleeping. Alison was discharged after 8 days. It was horrible – I should have been bringing both of them home but instead we where leaving Thomas in the NICU.

We quickly got into the routine of going to hospital every day around 10am and staying there till 5pm so we could do 3 feeds and spend time with him. We also quickly learned what the numbers and lines meant on the monitors. If I was ever unable to sleep I’d drive to the hospital just so I could sit quietly next to him while he slept. Somehow this made me feel useful. Christmas was approaching and we really hoped we could bring Thomas home, but the doctors said he was still needing too many interventions, so we had his first Christmas on the NICU.

Day by day Thomas was doing much better, suddenly he was “awake” and his doctor explained this often happened with babies born early, that they would suddenly become more awake around their due date. Exactly 5 weeks after Thomas was born he was discharged from the NICU. He was readmitted to hospital at 9 weeks due to bronchitis, he had his heart surgery at 16 weeks, and after a long recovery he came home when he was 22 weeks old. We haven’t looked back since.

Today, Thomas is a happy, healthy funny, and loving 8 year old. He loves playing football with Daniel, pretending to be their favourite Liverpool players. He likes riding his bike and playing with his toys. He loves singing, dancing and entertaining people. He has a funny sense of humour, he can make friends wherever he goes, he’s popular in school and has friends he’s had since he was a baby. He is my best mate and I couldn’t imagine our life without him! We are forever grateful to the surgeons, doctors and nurses, who kept him alive in those very scary, early days.