Tommy's guest blog, 17/01/2017, by Scott
The journey through Neonatal Intensive Care can be an extremely stressful one for parents of premature babies.
Uncertainty as to how well your baby will recover, worries about long term health problems and the distress of seeing your baby so small and unwell can make this a very difficult time.
Fortunately for Scott and his wife Janine, their baby boy Thomas, who was born at 27 weeks, is now a happy healthy one year old. Scott has shared their story to raise awareness for the fathers who endure this anxiety as well but are often overlooked.
Scott and Janine's journey began when they woke up to find that Janine’s face was swollen up.
After being checked over at the hospital, they were told that the doctors suspected Janine had pre-eclampsia, a combination of raised blood pressure and the presence of protein in your urine.
‘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.’
If left untreated, pre-eclampsia can be dangerous for both mother and baby. The only way of curing the condition completely is to deliver the baby and the placenta.
‘This was a massive shock. How can a baby at 27 weeks survive? We were so scared.’
If you are less than 34 weeks pregnant, the decision on whether to induce the baby or use other treatment to keep them in your womb as long as possible will depend on the severity of the pre-eclampsia versus the risk of being born prematurely for your baby.
Scott and Janine were told that the hospital would try to keep the baby inside Janine’s womb for as long as possible, but after a few days it was found their baby had stopped growing at 25 weeks. Janine would have to give birth in 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.’
Thomas was taken straight to the Neonatal Intensive Care Unit (NICU) after birth as he was so small and unwell.
Scott went to see him in NICU when Janine was recovered enough to move.
‘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 remained very poorly for the first three days of his life. He was ventilated, had a bleed on the brain and had problems with his heart.
He was moved to a specialist hospital in Hull where he stayed for a month in their intensive care ward, known as the red room.
‘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.’
After Thomas was stabilised, the doctors and nurses involved in his care met with Scott and Janine to discuss the next 48 hours.
‘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.’
Scott and Janine were given a room and shown how they could be involved in Thomas’ care.
‘We had never touched him before this point as we were too scared. This all changed in Hull as they showed us how to 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.’
Whilst he was at Hull, Scott kept a diary and was in charge of labelling 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 people’s stories and shared their ups and downs.’
Scott and Janine had to face the difficult decision as to whether they should give their consent to have Thomas put on steroid to help his lungs grow. Their consultant recommended doing so to help them move towards getting him off of the ventilator but this came with the added risk of causing complications such as cerebral palsy.
Scott and Janine put their faith in their consultant and fortunately the treatment started to work; Thomas began to grow in size and strength.
There can often be pressure on fathers to return to work after their little one is born which can be particularly difficult when your newborn is unwell in hospital.
‘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.’
By the time Scott arrived back at hospital, Thomas was doing a little better still.
After a month of being in NICU at Hull, 12 blood transfusions and reaching a weight of 2lbs, Thomas was moved back to the Special Care Baby Unit (SCBU) in Barnsley.
After 4 and half months in hospital, Thomas was discharged.
‘He was still tiny and was going home on oxygen, but he was coming home.’
Thomas is now over one year old and showing no signs of disabilities.
‘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 to be the case.’
Scott goes back to visit the hospital with Thomas to see the team who took care of him and has been fundraising for a new special care unit.
They have also gone to the Special Care Unit in Barnsley to offer support to other parents on their journey.
‘There is nobody better to understand than a parent who has lived through it…as Thomas’ father I am so proud of how he has developed and am forever grateful for what the NHS has done for us.’
If you or someone you love is facing the journey through the baby unit, it can be useful to familiarise yourself with the way it operates. You can read all of our information on each unit and levels of care here.
Get our free app for parents of premature babies. It is the first of its kind in the UK. 'My Premature Baby' is available on all devices (phones, tablets).
Skin-to-skin contact with your premature baby is a wonderful way for you both to bond. It also provides health benefits.
You will play an important part in your premature baby's care, even while they are in the NICU.
Your premature baby's diet will be carefully balanced to suit their tiny digestive system while meeting the needs of their growing body.