"Many parents don’t realise that sometimes the “big babies” are the sickest" - Sian's story

Sian's son, Gethin, was born full term and suffered from HIE. He stayed in NICU for a month, where all the other babies were premature. Here, Sian talks about how the experience affected her and her family, how full term babies in NICU are often misunderstood, and how she learned to cope after the experience.

Although I was a high-risk pregnancy, partly because I was geriatric (at 39), my pregnancy went smoothly. Apart from the baby hiding at every scan all was well.

At 39 weeks I hadn’t felt much movement one day, so went to hospital where the baby started rolling around, looking like he was having a party, as soon as the monitors were on. But as I had gestational diabetes the doctors were keen to induce me. The labour started fine, but after 18 hours ended in an emergency C-section under a general anesthetic as the baby was stuck.

It took six hours for me to come around only to be told my baby boy hadn’t been breathing when he was born. He didn’t breathe for 27 minutes despite resuscitation attempts. Then when the doctors stepped down thinking all was lost, he suddenly took his first shaky breath and was transferred to NICU. I couldn’t comprehend what had happened from everything being fine with our growing family, to my world falling apart. I was so cloudy and confused from the medication, all I could focus on was that we had had a little boy called Gethin.

For those six hours, my husband and mother had been on a rollercoaster. Mum had stayed by my side, while Rob was with our baby, he had been told Gethin wouldn’t be alive when I woke up. He didn’t know how he was supposed to explain what had happened and was breaking apart inside.

Because of my condition, I wasn’t taken to see Gethin until he was nine hours old and was wheeled to the NICU in my bed. Staff told me there were lots of wires and monitors, but there is nothing that can prepare you for the sight of your tiny baby covered in tubes and wires for medicine, temperature monitoring, oxygen, heart rate, food and more. Gethin had been starved of oxygen, which causes injuries to a baby’s brain, and had to be placed on a cooling bed to help prevent more damage being caused. The only contact we could have was to hold his hand, which is incredibly hard as your instinct is to pick up and warm your baby.

I was in hospital for a week which meant I could visit Gethin whenever I wanted day or night, and thankfully our home was only a five minute drive away. I was encouraged to express milk for him, as he was tube fed through his nose, but felt guilty that I couldn’t produce much, even though I knew every drop was liquid gold to him.

One of the hardest parts was not knowing what was wrong, what had caused this to happen (we still don’t have an answer) and worst, not knowing what the future would hold. Babies with HIE (oxygen starvation) are difficult to predict. One child who is classed as severe could have good outcomes, and another classed as mild could have very poor outcomes, and many don’t survive. Gethin was classed as severe, but we didn’t get given the diagnosis or an explanation until the fourth week.

After his cooling period they had to rewarm him slowly, which can be dangerous. At every step we were on pins having been told it was unlikely he would survive the rewarming, or the night, or leave hospital. We finally got to hold Gethin when he was three days old.

Gethin was the largest baby in the NICU, all of the other babies were premature. They all had their own cry, even the smallest who would have fit in one hand, one sounded like a puppy, another like a bird, but Gethin didn’t cry for two weeks. He was silent and that was so distressing. The first time he cried was when his food was 30 minutes late, and he started shouting and I was elated! Many parents don’t realise that sometimes the “big babies” are the sickest, a lot made assumptions we were ok and just passing through.

When he got sent for his MRI the entire hospital came to a standstill so that he could be walked in an incubator down the middle of the road to the other side of the site. It felt like he was a little VIP. We were so distressed when he came back, but an Occupational Therapist came to see him and made us sit on the side he wasn’t looking towards and talk. And then he turned his head to the sound of our voices which he wouldn’t do for anyone else. We were overcome. Now we knew he could hear, and that he recognised us!

Gethin was in the NICU for four weeks. These were the longest days of our lives. What compounded the difficulty was that our daughter Ffion, who was about to turn five, had been beside herself with excitement, but was incredibly sad about not being allowed to visit him. The one day we left early was her birthday outing to an ice cream parlour where we got a call from the hospital, Rob’s face went white. But they invited her to come and meet her brother! She still says it was the best birthday present ever.

Leaving hospital was wonderful. No trepidation, we desperately wanted to get home to start our new life. Gethin now has dystonic cerebral palsy, so has spasms, though some he can already control. He has a weak swallow and gag reflex so is fed through a tube in his tummy. He also has some issues with his sight, and is non-verbal, but can communicate well with smiles, has the most beautiful laughter, and can understand what is said to him perfectly. He is also incredibly determined and fun loving, so we have so much hope for him.

Life after an event like this isn’t easy. Everyone asks “how do you cope?” But you do, you have to, and you’ll never really know how. You ask yourself “why me”, “why us”, “why him” a lot. And sometimes you have to rework it to “why not?” We have an incredible support team in family and therapists and consultants. We know that ‘Gethin's Gang’ are always here for us and him. There are also amazing charities that help with equipment and our local hospice has been a godsend.

For us NICU was the start of what will be a lifetimes journey, not what we ever expected, but one where we have the most delicious little man and his bright beautiful smile to light the darker days.