A father’s journey through neonatal care

It all started on a Monday morning when myself and my wife Janine woke up for work at 5am. Janine’s face was all swollen up. We called her mum who is an ex nurse and got her out of bed to check her over. I was told to go to work and they would let me know what was happening. Janine went to hospital with her mum and after a check up the doctors suspected it was pre-eclampsia. I was called home from work and went straight to hospital.

We had never heard of this condition before, but Janine had been saying she kept swelling up and was just told it was due to being pregnant. At the hospital the doctors sat us down and explained what pre-eclampsia was and that the only way to cure it was to deliver the baby, although they would try to keep the baby inside the womb as long as possible.

“This was a massive shock. How can a baby at 27 weeks survive? We were so scared.”

The company I work for were so supportive and gave me time off to be with my wife. Over the next few days they monitored Janine’s blood pressure every hour. When Thursday came they did a scan in the afternoon and unbeknownst to us our baby wasn’t growing and was the size of a 25 week old baby. Again they sat us down and explained Janine had to give birth within the next 2 hours.The doctors also had to make us aware that our baby may not survive, and if it did it would be seriously ill and may have lifelong disabilities.

At the time it was all a blur and very upsetting, but to save my wife’s life this had to happen. The hospital explained step-by-step everything that would happen and by 7pm that night Janine gave birth to Thomas James Meyers weighing 1lb 12 oz.

He was immediately taken away from us as expected and the medical team worked to keep him alive. At the time we were so happy that he had survived so far. I got to have a quick glance and it scared the life out of me with how small he was.

He was rushed straight up to NICU and once my wife had recovered enough we went up to see him. I knew nothing about premature babies but my wife has a prem niece so she had a bit of an understanding. All the beeps and monitors and wires on our tiny baby was too much to take in and I just cried.

Thomas stayed in Barnsley for 3 days and his condition was getting worse. He was ventilated, had a bleed on the brain and amongst other things his heart was in a bad way too. We were told that he needed to be moved to specialist hospital once a bed became available. He was eventually taken to Hull hospital where he stayed for a month. We would have traveled anywhere as long as Thomas was going to be ok.

I remember walking down the corridor at Hull with a lead nurse and saying to her “he’s really tiny, you don’t understand how small he is”. She turned round and gave me a reassuring smile – ‘We have smaller here love’. When we got into the red room I was bowled over by all these seriously ill babies. I was scared stiff. In a world of words like CPAP, BIPAP, Hi flow, Low flow, long lines, oscillator and loads of other terms.

Thomas was stabalised and then all the doctors and nurses involved in his care had a meeting around his incubator. They discussed a plan for the next 48 hours in which we were allowed to join in, there was no holding back on anything. We were told everything in detail, everything that was wrong with our son and I was shocked by how truthful they were. At the time it was all a blur. Janine was still poorly after having a c-section and discharging herself to be with Thomas. We were given a room to stay in and I called my boss to explain what had happened. He told me not to worry about work and to just stay with my family as long as I needed to. I am so fortunate to have had such an understanding boss at the time.

As we settled in, we were shown how to look after Thomas. We had never touched him before this point as we were too scared. This all changed in Hull as they showed us how do do his cares, which involved mouth care, nappy changing and everything else. I remember the first time I touched him I was so scared I might hurt him. He was still ventilated.

Whilst in Hull I kept a diary and I was also in charge of labeling bottles of milk, sterilising etc. It gave me something to do as sometimes the fathers felt a bit left out. We also met and spoke to other parents and took comfort in other peoples stories and shared their ups and downs. After a week the good news was that the bleed on the brain had gone, but his main issue was now the PDA valve in his heart and getting him off ventilation. The consultant spoke about trying steroids to help make his lungs grow in order to take him off the ventilator and onto CPAP; but complications could be risk of cerebral palsy.

We gave consent, they knew best and we both cried again.

“After a while it started to work and Thomas was put first onto BIPAP and then CPAP. He was also gaining weight with mums milk!”

After a couple of weeks I felt like I could return to work and travel to Doncaster from Hull everyday. The morning of my first day back I called the ward to see how Thomas was. He had a rough night but I was reassured that he was going to be ok. I went on to work. I’m a transport supervisor for a very busy worldwide company. I sat at my desk and couldn’t think straight, all I kept thinking about was my son and wife. My colleagues told me to leave work but I waited for my boss to call to check how everything was with our deliveries. When he did I went outside and told him how I felt. I was upset, I couldn’t think straight and cried again. He told me to leave work and to go back to be with my family. ‘Scott take as much time off as you need on full pay’ he said. What more could you ask for in a boss? I went straight back to Hull and felt much better when I arrived. Thomas had picked up a bit too.

After a month in Hull, 12 blood transfusions and hitting a weight of 2lb Thomas was moved back to Hull. It was again upsetting leaving Hull as we felt so close to everyone, They had been our family for a month. We were told Thomas still had chronic lung disease. His heart valve had closed which was great news but still had issues with breathing.

When we arrived back at Barnsley and spent another 3 and a half months there. I went back to work again and was fine as Thomas was improving.

“After a total of 4 and a half months in hospital Thomas was finally discharged.

He was still tiny and was going home on oxygen, but he was coming home.”

Since he has been home we have worked with the hospital to promote the Tiny hearts campaign for a new special care unit and have raised £5,000 on a sold out charity event!. We were also involved in the World Prematurity Day last year and have done 2 television news interviews! I also turned up dressed as Santa on Christmas day to surprise the nurses. Thomas was a mini santa and had presents for all the hardworking nurses.

From time-to-time we go up to Barnsley SCBU to offer support to other parents on their journey now; as there is nobody better to understand than a parent who has lived through it.

Thomas is 18 months old now (15 months corrected), weighing 14 kg! After meeting with his doctor last week it is incredible how much he has progressed. He learnt to walk a few weeks ago! He is hitting all his milestones and at present is not showing any sign of disabilities. We hope this will be remain the case.

“As Thomas’ father I am so proud of how he has developed and am forever grateful for what the NHS has done for us.”

Thomas arriving early has made me a far stronger person than I was and now I like to get involved as much as possible with helping the hospital.

With special thanks to Scott for sharing Thomas’ story as he journeyed through neonatal care.