Our daughter’s colostomy – Kati’s story

Áine was born on her due date weighing 7lbs 12oz. After I was induced, Áine had become distressed and had to be delivered via forceps. She was immediately taken away to be resuscitated. Because I was on diamorphine, I remember very little about the birth which in hindsight is a blessing as my husband says seeing his daughter resuscitated was the worst thing he’s ever seen.

At first we were told Áine was going to neonatal care as a precaution due to the resuscitation but it would be four weeks before Áine came home. She had seizures at one day old and a later MRI would show some area of brain damage. She remained very ill but doctors did not know the cause. Daily blood tests, X-rays, cord gases and lumbar punctures were given but they still could not work out what had happened.

At six days old Áine’s bowel perforated in multiple places and she had emergency surgery which resulted in a colostomy being fitted. It happened on the first night I spent at home after giving birth. I was filled with awful guilt for leaving my baby and then when I received the phone call to ask if we could immediately come to the hospital our hearts sank. We knew it wasn't good.

Áine was blue lighted to the children’s hospital. I went with her in the ambulance and her dad followed in the car. Once we arrived at the hospital she was taken off to surgery and it was about five and a half hours before we saw her again. They were the worst and longest hours of our lives. Nothing will give you any comfort until you know your baby is safe.

During the surgery, we went to a local shop and bought Áine a book and some leggings to keep our minds occupied. We tried to stay away but I felt more relaxed close to the operating theatre.

After the surgery we were told that Áine had had most of her sigmoid colon removed. We were in a daze so the surgeon drew us a picture to explain which part was removed and we realised it was quite a lot. The fact Áine now had a colostomy was a huge shock. I’m a nurse myself so I’ve seen plenty; but on adults. I had never heard of a newborn with a stoma bag. Funnily enough we soon got used to it as a part of her and it was our task to empty and change it while she was in the neonatal unit. It actually made us feel more involved. We began to change her wound dressing too. We measured her poo and seeing her stoma work was such a relief.

The doctors still don’t know why this all happened. It is very difficult to accept, especially because we would like to have more kids in the future but there is an overwhelming feeling of worry and ‘what ifs’.

After a few more procedures and treatment for bacterial sepsis, Áine was finally able to take some of my milk via ng tube and then moved onto breastfeeding. The day we brought her home was the best and scariest day of mine and my husband’s lives.

It was difficult in public at first. People couldn’t help staring at Áine at her swimming classes. At baby massage groups I was limited as to what I could do and I felt sorry for my little girl missing out. I worried her stoma bag would burst and it was difficult to change her bag. Friends and family were great as they reassured me and made her “belly bum” normal.

At five and a half months old Áine had the colostomy reversed and she has been doing extremely well since. We celebrated that first poo. To look at her you would never know how ill she had been.

Since coming home I have struggled with post-natal PTSD. The nurses warned us that the experience would hit us when we went home but we didn't believe them. Avoidance of leaving the house, separation anxiety, being over protective for no apparent reason, breaking commitments because you are scared of putting your child in a dangerous situation. These are a few of struggles I experienced post discharge. I’m doing much better now thankfully but it has been a long road which many people haven’t understood. The traumatic memories don’t go away but they fade and become manageable.

If we could offer advice to anyone whose child needs a colostomy we’d say: take your time and remember to look after yourself. A colostomy doesn’t define your baby, it only tells a story of how strong they are and what they have overcome at such a young age. If anything, it’s easier than changing multiple dirty nappies a day!

To all the parents and families with babies in neonatal care, stay strong, speak to the Bliss representatives, chat to other parents and comfort each other. Áine was kept in isolation due to infection and not being able to speak to others on the unit was very tough for us. If that’s your situation too remember – you can do this and we’re thinking of you.