My miracle baby

I'm Sarah. I live in Kent, UK, and I'm married to Graham and have 2 children, Alice aged twelve and James aged nine. James’ start in life was on the very cusp of viability back in 2001. He was born 16 weeks early, weighing just 1lb 11oz.  Miraculously he survived. Today he is a healthy 10 year old interested in Dr Who and Karate!

“My baby was born very early, at 24 weeks gestation, and survived. I had an easy pregnancy with Alice and she was born a day after her due date weighing a healthy 8lb 8oz. Two years later I was excited to be pregnant again but this time the pregnancy was not smooth.  Quite soon after becoming pregnant I noticed some bleeding and had a scan. I was told to rest but nevertheless the intermittent bleeding persisted.

At 22 weeks, just when I started to look pregnant, with a small, neat bump I realised that something was not right. The water around my baby was leaking. 

I was admitted to hospital and told to prepare for the worst. The doctors thought I had an infection but hoped that, with rest, my waters would build up again. The next week, despite rest, things did not improve.  I was transferred to another hospital with a neonatal intensive care unit and all the specialist equipment and highly trained staff who could deal with an extremely premature baby.

The prognosis we were given for James was very poor.  Although at 23 weeks he was “viable”, being fully formed, his lungs and nervous system were immature and our consultant paediatrician told us that he would probably have disabilities and/or brain damage and had a slim chance of surviving. At this time I was given a course of steroids to try and prepare James’ lungs for life outside the womb.

This was a frightening and difficult time for us and our Christian faith proved to be a huge support to us.  Our friends, family and our church prayed that things would be ok.

The hospital worked hard to delay James being born but a day before he was 24 weeks my labour started and a day later, at exactly 24 weeks, James was born.

He was born still in the amniotic sac, but with no fluid in it and had to be cut free.  I remember this as a very traumatic time.  The labour room was full of staff, midwives, obstetricians, paediatricians, special care nurses and very busy.  As he arrived we heard a small meow, like a little kitten. Graham and I allowed ourselves the very briefest of smiles then James was rushed away to be stabilised.  He weighed 1lb 11oz, less than a bag of sugar. It was not until the next day that we saw our baby again.
It was very strange to have our baby taken away from us and cared for by people we had never met.  We had to put our faith in the doctors and nurses who would care for James in the coming long weeks ahead.

When we saw James for the first time it was a shock.  It was not what we expected and he did not look like a baby.  He was in a misty incubator and looked like a scraggy little doll with downy haired back.  He had no fat at all and looked incredibly fragile and small. His arms were the size of my fingers and his tiny hands had perfect little fingernails.  I think it is fair to say that when I looked at this little scrap of life I detached myself a bit to avoid the full reality of what had happened.  I think this was my way of coping.

Because James’ lungs were still immature he was helped to breathe with a machine, a ventilator. Initially I left Graham to deal with all the medical things and that whole new, strange world of equipment and technical language.  I would leave the room when a ward round took place and let Graham deal with it but when Graham developed a cold I had to become more involved.

It took two whole weeks before I was allowed to hold James and, candidly, I have to say I found it nerve wracking.  Even then over the next 2 months I only held him a handful I times.   I was afraid of disturbing him or of something going wrong. 

The one key thing I was able to do for James was to provide breast milk and eventually I was able to breastfeed James too. The only thing I could do as a Mum was to give James my milk. Expressing milk is really difficult when you are not feeding on demand but the nurses were very encouraging and I set my alarm for 2.00 a.m. to do the night feed even though my baby was probably asleep in hospital. I had a photo and teddy which helped me produce the milk and the Special Care Baby Unit lent me an electric machine. It seemed quite unnatural and surreal hooking up to the machine every day and even if the amounts dwindled every drop was important so I persevered.

The whole experience of having a baby in a neonatal unit was alienating and terrifying.  We had many ups and downs.  His lungs would collapse and he would have to be resuscitated.  One day is really memorable.  We walked into the unit and the nurse said to us

“I have a surprise for you!”

James was off his ventilator and dressed in clothes for the first time.  He was seven weeks old.  That was the first time Graham and I really relaxed in any way and that evening we went out for dinner. It was a real turning point for us. But the next morning James was back on the ventilator and it felt that we were back to square one. Walking into that unit each day you were never quite sure what awaited you!

As soon as James was looking and behaving more like a healthy baby felt it was easier to bond with him. I began to take a more active role in caring for him, I would try to get into hospital for the early feed before Graham went to work and went back in with Alice, we used to read to him and get him used to our voices and smell.

After 4 long months James was ready to come home weighing 6lb 9oz and looking like a newborn baby. Alice was very happy to have her baby brother at home at long last.

The first year of James’ life was very worrying. He was admitted into hospital frequently with breathing difficulties whenever he caught a cold.

James reached all his milestones but in his own time. He did not sit up until he was nearly one, walk until he was nearly two or speak until he was three.  He also found eating solids difficult, probably because of all the tubes he had down his throat.  

He started nursery and soon followed his friends and began to eat well and at the age of four joined his sister in “big school”.  He may have been born early but despite the rocky start in life is a happy, healthy ordinary little boy who was our miracle baby.

James has a hearing impairment which means he needs to wear hearing aids at school and has just been diagnosed with dyspraxia. These may be as a result of his prematurity or he may have had these problems anyway.

He is in mainstream school but with his added obstacles finds certain things quite difficult. We have recently graduated from the ‘non swimmers’ class after 3 years! Swimming has taken perseverance and commitment luckily James has both in abundance.

I know Secondary School will be challenging for James however we do get a lot of support from his school and I’m sure we are more worried as parents than James is about moving up to his next challenge.

Looking back it seems a lifetime ago and all the anxiety and worry has abated. We tried to remain positive at all times but particularly in the hospital took each day as it came and dealt with whatever came up. I don’t think I would do anything differently and would encourage anybody in the same situation to stay calm and trust in the doctors and nurses who take such care of your tiny baby.