Lolly's Story

My twins were born by emergency C section at 27 weeks on 14th July 2002. Jessica became an angel 30minutes after delivery due to undiagnosed Twin to Twin Transfusion Syndrome . Jessica was 3lb 11oz and Lolly my survivor was 1lb 9oz .

Lolly did well at first and didn't require breathing intervention after 24 hours. By Day 2 they'd started feeding her 1ml of milk an hour. On Day 3 I got discharged as I was struggling up on the ward listening to babies crying when I had one in Intensive care and the other in the hospital mortuary . I'd not long arrived home when I got a call to say Lolly had vomited a small amount of blood so they'd stopped her feed for now and were monitoring her . I called later and they told me she was not able to have milk still and she hadn't vomited again but she wasn't settled .

The next day her tummy had started to swell a bit and she had developed a temperature so they were resting her and giving antibiotics . At this point Lolly also needed to go back on the ventilator to help with her breathing . Lolly remained comfortable but they were getting concerned as her tummy was now huge , she was extremely pale and she hadn't had a bowel movement . On the Friday morning 5 days after delivery we got a phone call to get to the hospital as soon as we possibly could . We were terrified as we were going to register Jessica's death later that day .

On arrival at the hospital Two doctors and a nurse greeted us and Lolly's incubator was covered over . We were ushered into a room and they said "We don't know how to tell you this but Lolly we think has NEC an infection which has caused a perforated bowel . At this moment we are desperately trying to get her a bed in one of the two children's hospitals that could perform a surgery on her . But there are no beds available". At that point I think my worst nightmare had just come true. I don't know if I even realised what the Doctors were saying to me . Both Children's hospitals are about 30miles each way from our home . All that was going through my mind was the fact that we would be registering two births and two deaths because there were no beds available . All they could to was keep Lolly comfortable and hope .

My husband at the time decided to go off and register the births and Jessica's death and I decided to stay by Lolly's side for a while . I was still extremely sore and tired having the C section only 5 days before , plus having an almost two year old to look after , so I just sat there staring into her incubator willing her to live . At 4pm I left to go home . I'd literally just got through the front door and the phone was ringing . There was a bed in Intensive Care at Birmingham Children's Hospital . If Lolly survived the journey there , then there was a chance she would get the surgery that night . I got straight back to the hospital . I wasn't allowed in the ambulance with her but I followed behind it . The ambulance had to stop on the way there to resuscitate my princess . Birmingham had already rang my husband and he gave consent verbally over the phone to go ahead with the surgery on arrival. We arrived driving on blue lights and sirens as it was rush hour too down the M6 . By the time I got parked and in Lolly was on her way to theatre and I met them in the corridors. I gave her a really quick kiss and she was gone . I signed the consent form when I got to the ward . By now it was 7:00pm . The next 5 hours of my life dragged . Every single tick the clock made sounded so loud . There was just me , my husband and my brother in law waiting in a tiny room . At 1:16am the door opened . In came a nurse looking very glum followed by the surgeon . First he shook our hands and then offered his condolences on the death of Jessica. Then he said Lolly's surgery had been extremely tough . She had NEC and her bowel had perforated in two places . She also had septicaemia . He'd removed quite a long piece of her intestines and he'd made an ileostomy. Lolly was extremely sick and would be going to Intensive care and all we could all do was hope . We would be able to see her shortly .

We were after about 45minutes called to go into Intensive care. Just as we walked across to her incubator the alarms were going off and they were bagging our tiny princess to get her breathing again . After that scare she gave us , a few minutes later and she was kicking and wriggling like nothing had happened. Two days later and she was transferred back to Coventry to our own hospital.

For 8 weeks she bounced between Intensive care and the High Dependency Unit . Lolly wasn't gaining weight like she should . She still only weighed 3lbs despite extra calories and high energy feeds. So it was decided on her due date that our only option was to reverse the ileostomy and hope that she would absorb the food . So on September 17th she had her reversal surgery . After two weeks in Birmingham Children's hospital followed by a few weeks in our own hospital Lolly finally came home .

For the next 7 years Lolly struggled to gain weight and suffered from severe constipation . Her bladder was also affected and she had no control over it . So she was given a suprapubic catheter and tests were started on her bowels . Procedures and tests were then carried out . After 39 General Anaesthetics it was decided Lolly needed to have a stoma . Her bowel just can't work by itself . After much discussion it was decided the ACE stoma would be best for Lolly .

Four years ago exactly her appendix was used to make the pouch for her ACE stoma . Since then her bowel has mostly worked better . Lolly lives her life as best as she can . But NEC really is a horrible infection to get .