Angelina & Summer
“In August 2003 we stopped trying for a baby after having tried for a year and decided to have a break and enjoy life! Within a month I found out I was pregnant. I was just getting used to the idea when, at my 12 week scan, I was told it was twins! The pregnancy was fine and I thought that I had at least 28 weeks to get used to the fact I was having two babies instead of one. How wrong could I be?
I was in a meeting in Bristol at 26 weeks when I had a strange sensation in my tummy. Something didn’t feel right. I made the train journey home and phoned the Princess Royal University Hospital (PRUH) and was told to go there straight away. Ian and I arrived at the hospital at 8pm and they put me on a monitor. At 10pm they suggested that Ian go home as they thought I was having Braxton Hicks contractions. The consultant examined me at 2am and said my waters had broken and I was already dilated. This was labour and it was happening now. Phone calls were made to all local hospitals to find 2 incubators as the PRUH only have facilities for babies born from 28 weeks. I was only 26 weeks and the babies were on the way.
Eventually they found space at Medway Hospital in Chatham and preparations were made to transfer me there. Whilst plans were being finalised, the consultant came to see me as well as the midwife who would be travelling with me. Ian was driving to Medway to meet me on arrival.
The news was not good. The consultant told me that there was only a 20 per cent chance of survival for both the twins, who we knew were both girls. Immediately panic set in. On arrival at Medway I was 7cm dilated and was rushed down to be prepped for an emergency caesarean. Ian came into theatre with me where we were met by about 20 staff; doctors, nurses, midwives and anaesthetists to name but a few. The noise was overwhelming.
Things were happening quickly which only increased the fear I was already feeling.
Within what seemed like minutes Angelina was delivered followed three minutes later by Summer. Neither of the girls made a sound and both were whisked away after only a fleeting glance. I was told the girls were going to SCBU. I’d no idea what this entailed or what having a premature baby involved so having to go through it twice was a challenge.
I was taken up to a ward and was surrounded by other new mums who all had their babies with them. I wasn’t allowed to visit the girls until midnight and didn’t even have so much as their photo.
On the way to SCBU I didn’t know what to expect. I was completely unprepared for what I saw.
The incubators were covered in steam and condensation, trying to recreate the womb. Angelina, who weighed 840 grams, and Summer, weighing just 760 grams, were covered in hair and looked like baby monkeys. Summer’s eyes were fused together. Their skin appeared to be transparent as I could see the blood vessels. I was horrified.
I tried to detach myself because I didn’t think they’d survive. They were already fully ventilated and had many lines attached to different parts of their tiny bodies. They had been through so much; what hope did they have of survival? I wanted to be prepared for the worst and not get too attached. This proved to be impossible as I fell in love with them straight away.
I lived at the hospital and I had to ring SCBU to let them know I was going up. Ian would do the call as I was always worried what they would tell me.
In the first couple of weeks Angelina had jaundice but continued to thrive, but Summer was a different story. Infection followed infection. She contracted bacterial meningitis when she was 3 weeks old and became very poorly. She lost all of the precious weight that she’d gained but still battled on.
As soon as Summer started to recover we were told that she had Necrotizing Enterocolitis (NEC – a serious disease affecting a baby’s bowel in the first three weeks of life. Sick and preterm babies are at increased risk of developing NEC, causing the baby’s abdomen to distend and blood and mucus to appear in their stools. A baby’s bowel may even perforate because of it). Summer’s condition got gradually worse and she was transferred to Lewisham Hospital. She was so ill. I just remember looking at this tiny baby and thinking what else can she take?
After nearly a week we were told that she needed surgery as they suspected her bowel had perforated. She was taken down to theatre and I can honestly say that I thought it would be the last time I’d see my beautiful baby girl alive.
She pulled through again though; she survived the operation. Our consultant told us that, during the operation, Summer’s bowel had perforated 12 times in the small and large bowel. They had removed 26 inches of her bowel and had given her a stoma (A stoma is where the bowel is passed through the abdominal wall creating an opening of the bowel through which faeces can be expelled from the body and into a bag). We started the slow process of feeding her and eventually, little by little, she began to gain weight.
Angelina meanwhile was doing well. Within two weeks she was on CPAP. (CPAP is a mixture of air and oxygen blown through a babies nostrils and down into their lungs to help keep them open after each breath).
Within six weeks she was breathing on her own.
The time came for Angelina to be transferred to the PRUH. We had mixed feelings about this as I’d begun to feel reassured by the constant buzz of a high dependency unit and didn’t know how she would cope being moved.
The transfer went smoothly. Having a baby in Lewisham and a baby in the PRUH was much easier than Medway (Chatham) as I don’t drive and was having to split my days between hospitals – much of them wasted on trains and cab journeys.
After ten weeks Summer was also strong enough to be weaned off ventilation. At last we were told the news that she would be transferred to the PRUH. Again I was wracked with anxiety about the transfer but it all went smoothly.
My two little miracles were together now in SCBU at the PRUH. Things began to calm down and Angelina and Summer began to thrive. Both girls were stable so it was a case of waiting for them to gain weight and getting Summer off oxygen.
The nurses on SCBU were a godsend. They were always on hand to help and to offer advice. They showed us how to bath the girls and encouraged a hands-on approach, which was what really bonded us to the girls. We were beginning to operate like a family unit – albeit in a hospital room!
I began to room-in as much as possible. Rooming in was a fantastic facility allowing us to look after the girls on our own through the night. This helped us get used to our babies, find out their sleeping patterns and find out first-hand how easily the saturation monitor goes off! The doctors were all very helpful and informative. They were always willing to talk through our concerns and, finally, to give us the encouragement to go home. We were given a first aid course before we left which gave us the confidence to know how to act if there was a crisis at home.
The day came at last when we were told that we could take the babies home. We had clocked up nearly four months in hospital!
Summer was still on oxygen so we had that installed in our flat before the big day. It was strange having the girls at home and we felt a bit lost without all the support we had in hospital.
The Homecare Team’s visits really helped us though. A nurse used to come every week to see how Summer was doing with the oxygen and helped me to devise a ‘training programme’ to get her off it. We were able to do this within 6 weeks of her being home which was great. As we got into a routine, normal life resumed. We are also so lucky to have had massive support from other various agencies involved with our girls, most notably Early Support and Portage within the Phoenix Centre and from our amazing Health Visitor. Both girls have speech delay. Angelina has pretty much caught up but Summer’s vocal chords were damaged during the intubation so she didn’t utter a sound for the first two years of life. She started to make sounds about nine months ago and is now chatting away in her husky little voice. Summer also suffered hearing loss in both ears from the meningitis so she wears hearing aids in both ears. None of this gets her down.
Summer had to go back into hospital for the reversal of her stoma and, unfortunately, there were many complications. We nearly lost her twice, but again she proved to the world what a fighter she is!
Three and a half years on and Angelina and Summer are at pre-school, which they love. It’s hard to believe that they’ll be starting mainstream school next September. They are two happy and cheeky little girls who have been through so much; yet never let anything get them down. Thank you for reading our story. I hope it can give some hope to other parents in SCBU.”
Lisa MarieGo Back