When I was pregnant with Spud I joined a Birth month group on a baby forum. I met some wonderful women, some of whom I now consider friends. One lady, Lisa Clark, was due about 2 weeks after I was and at 24 weeks went into labour. It sent shock waves throughout our group as we welcomed our first little addition. Here is her story:
“My experience of Having a Premature Baby”
by Lisa Clark
My pregnancy was going well until just before 24 weeks. I started getting tightens which I thought were a bit strange but was told they were Braxton hicks and as Harley is my first I didn’t know any better. That night I started bleeding and felt unwell, my plug came away so my husband rushed me to hospital where I was told that my baby was coming. They gave me steroid injections to help the baby’s lungs and in the early hours of the morning I had a consultant come and talk to me and my husband to explain what would happen if the baby came now. Basically they said he would have very little chance and if he was too damaged by the birth they would not help him. They explained that if he it did make it, he would have problems. I cried for the rest of the night.
The next morning I was told they had got it wrong and everything was still holding. I was kept in for a couple of days and then told to rest at home. Four hours after arriving home my waters broke. All hell broke loose; my husband was a mess and didn’t really know what to do. Luckily my brother was there and he sorted everything out and the next thing I know I’m being blue lighted to my local hospital. When we arrived we were told that they don’t take babies under 26 weeks and I have to be transferred to Bristol which is 3 hours away. At this point I was so confused by what was going on and felt totally useless. The baby was resting on my bladder and I had to have a catheter put into place which is not something I would wish on anyone. The ambulance came and I have never got to Bristol so quickly in my whole life. The drivers where lovely and Harley still has the teddy that they gave us.
The team spoke to us again when we got there. As I was now just over 24 weeks the chances had gone up a bit but I felt so hopeless and hated the fact that my family were so far away.
I was on a ward with women that were all full term and I hated it. I hardly left my room; my husband had no clothes and was only just allowed to stay with me because I broke down. We washed his socks and pants in the sink and sneaked him in the bathroom so he could have a wash as our family weren’t able to get up to give us more stuff for a few days.
What followed were the worst 3 days of my entire pregnancy. I was having contractions but they were all over the place. They would be regular for a few hours then stop. I was given gas and air but none of the equipment to monitor the contractions worked and the midwives would not check me as they were scared they might give me an infection. I had a student midwife overnight and she couldn’t find a heart beat my worst fears were coming true. A team came rushing in but the baby was still there just really far down, I was so fed up at this point I just wanted to have my baby and get on with it, I didn’t want to be in limbo any more.
That morning everything stopped. My husband and I got a couple hours of sleep before I woke up feeling like I needed to go loo. Half way there I remembered that I had read it can feel like that when the baby is ready to come. I walked back to the room and got my husband to get the nurses and begged them to check me. She ran and got the Consultant who checked and then looked up at me and said “The baby is coming now.”
Hundreds of thoughts rushed to my head. Firstly, what the hell?! How is it possible?! I wasn’t having contractions anymore! The Consultant said this can happen in very rare cases and I was having a silent birth and was extremely lucky that I was in hospital. They brought in loads of equipment and I had so many people there. The midwives had to coach me on what to do and I had no pain relief as there wasn’t time. Twenty minutes of pushing and Harley came in to the world at 25 weeks gestation weighing just 1lb 10oz.
I got to see him for a second and then he was whisked away. They said we could visit in a couple of hours but they needed to set everything up. Being 25 weeks pregnant when he was born had increased his chance of survival to 40% but the next 48 hours were critical.
Our lives were turned upside down. Straight away we had to start making decisions over his care. When I first got to see him I had never seen a baby so small. He was perfect – 10 fingers, 10 toes, everything was there but with so much equipment and things beeping all the time, I couldn’t believe that he could make it. I hoped with all my heart he would.
I was moved on to a postnatal ward but there was only one other mother to a preemie on our wing. I was there for two weeks and it was a living hell. I got to see all these women with their new babies going home and I knew we wouldn’t be able to do that for a long time. I didn’t talk to any of them, god knows what they must of thought but I couldn’t face it.
I went to see Harley all the time and I got shown how to express milk so he could have some of it. I got to hold Harley two weeks after he was born. It was so wonderful but it was also very difficult as he was surrounded by wires and tubes.
We then were allowed to start taking over some of his care, like washing him, changing him, and feeding him through his NG tube. Harley was amazing he went from strength to strength. He was always the one making trouble and coming out of his little doughnut that they put him in. I remember watching him pull the leads off of his chest and throwing them at the nurse checking him over. I thought to myself my god what are me and my husband in for when he gets bigger.
That week another baby in the unit died. It was such a shock because it was born at an older gestation and a better weight than Harley. It was then that I truly understood how vulnerable Harley actually was and that every day with him was a blessing.
We starting taking more photos and dressing him and made sure that everyone was so careful around him. My husband was amazing. He was my rock he stayed with me as much as he could. If he wasn’t able to, my family came up and saw us. After we had been there for about 5 weeks the girl I was in the ward with was able to take her baby home, I was happy and really sad as I missed her so much. My friends were great but no one really understood what I was going through. Nearly all of them had been blessed with normal births and healthy babies.
Then we got the news Harley was finally able to get transferred back to Cornwall after 7 weeks in Bristol. The journey took 8 hours as they have to be so careful with him. At least now he was closer to his family and I could live at home again. It was really surreal and it took me a few days to get used to it. The house felt so empty. All the baby bits were ready but still no baby. He continued to make great progress and finally the word “home” was mentioned on the condition that we learned to do all his medical care. We jumped at the chance as we had done a lot of it towards the end in Bristol anyway and I was desperate to have our baby at home with us where he belonged. After 11 weeks in hospital he came home. My husband and I were both terrified. We had gotten so used to being helped by all the staff and the medical equipment that we couldn’t believe that we now had to do this on our own. That was when I had my breakdown. All the strength I had just went and I could barely cope with anything. I forgot what day it was and went around in a daze.
Whilst in hospital Harley had a total of 5 blood transfusions, loads of tests, scans, medication you name it. They told us that babies born before 27 weeks rarely come out of the experience untouched and to be prepared for whatever the after effects would be.
Harley started seeing doctors pretty much straight after he left hospital and he was put on more medication. I went to mother and baby groups but Harley was older yet so much smaller and I got so fed up at the questions so I left that world behind. The health visitor was nice but had never dealt with a baby as early as Harley and most of the rules didn’t apply to him. I felt very alone for a long time. Harley didn’t meet any of the normal milestones and we started seeing a physio to help, then he wasn’t eating properly the list kept growing along with the number of people we had to see. Harley has had to have three operations so far and I’m keeping my fingers crossed he won’t need any more. Waiting for Harley to come out of theatre is one of the most stressful things me and my husband have ever had to do.
I tried to go back to work but we had so many doctors appointments and that first winter Harley was so poorly he had to go in to hospital with several chest infections it just seemed impossible.
I got told about a group for parents with children with additional needs and starting going. I had finally found a world we fitted in too. They told us about benefits we could get and other groups we could go to and slowly I started to understand this world that we had been catapulted into. I trained with the group and now I’m a volunteer befriender, I support other parents of children with additional needs it has given me more confidence and I love helping other people so much.
Harley is three in December and I have finally realised that I have a child with a disability. We still don’t know the extent of his problems and I have heard the phrase “wait and see” so often that I am considering changing my name by deed poll to it. We still see a lot of doctors and he is going to have more tests over the next few months so we are hoping to start getting some answers soon and a diagnosis if there is one.
Life is still hard and I don’t see that changing for the foreseeable future. We have good and bad days and sometimes I still cry over the pregnancy I never had, the fact that my body failed me and the perfect healthy baby that we all want. After everything I have an amazing little boy who is in every right a modern day miracle and I wouldn’t be without him – he’s my cheeky monkey.