Blog post by Helen Sutcliffe
My father Robert lost his battle just one week after he had been diagnosed with terminal cancer. It was a great shock to our family as he had not been poorly for long. He had just finished having investigative tests when the cancer was found.
I was 30 weeks pregnant with my first baby when I was planning dad’s funeral with my family. The same evening my waters broke. I was told I would probably go into labour in the next two weeks and was admitted for monitoring. That night labour started and progressed very quickly. I didn’t really believe what was happening and insisted it was just stomach ache.
Reggie Robert was born at 6.56am weighing 3lb. I didn’t get to see him as he was rushed away in a plastic bag to keep him warm.
Reggie was taken to the neonatal intensive care unit, put on Continuous Positive Airway Pressure (CPAP) to help with his breathing, and under UV light for jaundice. Over the next week he slowly grew stronger and at one point we were told he might move to the high dependency room. I read a poem at my dad’s funeral and talked about little Reggie, how sad I was that my dad never got to see his grandson.
But then Reggie stopped passing stools, his tummy became distended and his breathing deteriorated. The nursing staff explained to us the possibility of necrotising enterocolitis or NEC, a potentially fatal disease of the bowel. After antibiotics and stopping all feeds (he had a TPN – Total Parenteral Nutrition drip) he seemed to improve.
One week later however, he deteriorated again, rapidly. I was on my own with him one morning, he was struggling so much he was sedated and ventilated so his body didn’t have to do any work. It was so frightening; he needed to be transferred to a surgical unit. I went in the ambulance with him, crying all the way there.
The place was amazing. We were shown to a flat across the road where we could stay at no cost. I was to live here on my own as Tiv my partner had to go to back to work in Halifax. He came at weekends as it was nearly two hours’ drive to Liverpool.
A surgeon monitored Reggie for three days until she decided surgery was required. The night before his operation we had a haunting call at 3am. I was so scared to answer the phone. ‘Reggie’s taken a turn for the worse, please come in’. Reggie had had a bleed from his lung, the blood had come up through his ventilator and the nurse looking after him had to press her emergency button for help. Miraculously he came round and the medical team managed to stabilise him. Surgery was still to go ahead.
Eventually the surgeon appeared and she explained she had cleaned out his bowel and formed an ileostomy (a stoma) to rest his bowel. She said it had been ‘rocky’ and he had had two more pulmonary haemorrhages in theatre.
We went to see him in recovery. He looked so sore, swollen and tired. The surgery had been a success, now it was up to him to get through the next few weeks…
I stayed at the hospital for six weeks with Reggie as he slowly recovered and grew stronger. He remained on TPN, which meant he developed a liver disease called prolonged conjugated jaundice. But all this time I had been expressing milk and eventually with help from a lovely nurse I managed to get him feeding from the breast. This was such a happy day, to be able to feed my own child. I had never once considered not breast feeding him. I learned how to care for his stoma; changing the bag and cleaning the wound. I shared a flat with other parents, all going through similar frightening experiences. They were great friends to me and always will be.
We were transferred back to our local hospital and I continued to feed Reggie on demand. The nurses fed him by cup at night time when I went home.
At last after 14 weeks the day came to take Reggie home. It was exciting but so very frightening and overwhelming to have him at home with no nurses and no monitors. He still had the stoma so I ventured out very little as it was messy and I didn’t feel confident without all my equipment at home. He was on ten different medications and suffered with terrible reflux. I had a community nurse visit weekly to take bloods to monitor his liver disease which very slowly improved, and his weight which suffered as food was not completing through his body with the stoma. We also had a surgical nurse visit weekly to check his stoma. She told me I was doing an excellent job of looking after it, but Reggie failed to thrive and continued to be jaundiced from the liver problem
The liver disease eventually cleared up but the reflux continued until he was about 13 months old. I’m happy and proud to say that I breastfed Reggie until he was 16 months old.
Today he is approaching three and he is the most incredible little boy; so intelligent, so polite and well mannered.
He has a small issue with gross motor skills whereby he is a little delayed and is over flexible due to being born prematurely. He also has a hypersensitivity to sound but after all he has been through he is just an amazing miracle little boy. I will never forget the experience, I met some amazing people and I was aware of babies losing their tiny lives on that unit. I know that I am extremely lucky to have Reggie, and now his baby brother Remy George who he absolutely adores.
And I just know my dad is keeping an eye on my gorgeous boys!