Ursula's experience

I found out that I was pregnant, after a first attempt, in Nov 2001 at 4 weeks and 2days! Obviously elated and shocked and suffering from that day on from morning, afternoon and evening sickness, I plodded on. I remember doing a school Parents Evening and puking in between appointments! Got engaged, moved house and went for my first scan at 12wks.

Immediately, on seeing the screen, I spotted a large ball on my baby’s abdomen. The ball was and still is, the size of her head. The consultant told me the baby has a problem. I knew, I don’t know how but I wasn’t surprised. After that she explained that it was a rare anomaly called an Exomphalos, that it was large, it probably wouldn’t be due to a chromosomal defect and that I may choose to have an amnio there and then. I decided to go home and digest what she had said. The drive home from Leeds to Manchester seemed to take for ever. John, Hannah’s dad and my partner ( then) was beside himself. I was unnaturally quiet and calm. Suddenly I became the soother and pacifier to friends and family. Life was so unreal, I just felt that I had to support everyone else. The next day, I phoned the consultant for further information. She said that she wasn’t surprised to hear from me as I’d been SO calm!


John and I flew to Tenerife two days later for a pre-planned holiday. We knew that we couldn’t meet the consultants at Manchester until the week after. We didn’t want to go but what else could we do. Ironically, my day sickness stopped the minute we got on the plane. It was the saddest and most awful holiday I’ve ever had. There I was, swimming costume on, seeing my stomach in front of me each day yet not understanding what was going on inside. I started writing to my child. She became my confidante and my purpose and got me thro. We first visited St Mary’s Hospital, Manchester in Feb 2002. The consultant scanned me and said that the Exomphalos was huge. She said that the medical profession recognised this condition as a viable reason for termination and offered me an amnio. That night, if I’m honest, I considered a termination. By the next morning I knew that my baby would make the decision. I had the amnio, got the results two days later that the chromosomes were normal, found out that I was carrying a little girl and proceeded from there

I was having 4weekly scans and each one brought up more information. Suddenly there were questions about Edward’s syndrome and gigantism as my baby’s features seemed to be very large. I met with the surgeon at 20 weeks. He told me that any Exomphalos over 5cm in diameter would be a challenge. At the time, my baby’s Exomphalos measured 7cm. He also told me to enjoy every day of my pregnancy as a day in my daughter’s life as he didn’t expect her to live after 4-6wks.

I had planned to work up to the end of June (approx 32wks) but I went to work mid June and just cried. I couldn’t talk, couldn’t face my class and remember writing a message to my colleague to get me out of there! I was 30wks and absolutely HUGE!! It was as if every thing had suddenly hit me and I didn’t have the strength to keep up the act. At my last scan, 34wks the consultant’s words were “you’re skating on thin ice". Hannah’s Exomphalos measured nearly 10cm x 10cm. I never doubted that my daughter wouldn’t be born alive. I never packed a hospital bag until the night before my hospital admission and yet all I had bought for my baby was a little dog. To this day, two years on, doggie is Hannah’s comforter and best friend. When she lost the original at 15mnths old, I had to get a replacement sent from the USA!!

Hannah was born by C -Section on 8/8/02 at 11.03am. I’d been given a pre med but by the time I got to theatre, it had worn off. Let’s just say that five attempts by the junior anaesthetist to get the spinal block in were not pleasant! The morphine kicked in. I remember talking to the nurses about holidaying in France and then I heard a cry. The sweetest, most beautiful sound in the world. I remember asking if the sac containing the Exomphalos was intact but that’s about it. I’d previously been told that Hannah would be wheeled past me on her way to intensive care. She wasn’t and it was only later that I realised how much I had missed that moment. I was told that she had scored 10/10 on her scores, weighed 8lbs 13oz and that was it. John went to see her and luckily we had borrowed a camcorder. I saw my daughter, via the recording, crying for food and mummy. These are still the most precious images in my life. 

I didn’t get to see Hannah until the day after. Because of the size of Hannah’s Exomphalos, my wound was large, bruising was vast and the pain indescribable! I was wheeled to see her that morning. By this time she’d been sedated on lots of morphine and her Exomphalos had been cushioned in a huge sponge. My brother Steve, who has a dry sense of humour, said how kind it was of God to have provided her with her own space hopper.I was told by one of the surgeons that her kidneys weren’t working and if they hadn’t kicked in by the day after, her short life would be over. Hannah, being Hannah, responded overnight and started weeing for England.

Hannah had lines in every part of her body. All I could do was stroke her face and her arm. I used to sit in the unit late at night and sing to her, choking on the words but unable to leave except to return to the ward to express my milk. The nurses on the unit were fantastic. They gave me photos of Hannah, they cared for me and listened to me but were never intrusive. They talked to Hannah with love and compassion and treated her with the gentleness and respect of a conscious person.

More toys Mum!

After a few days, Hannah’s Exomphalos was strung up from the top of an incubator by what can only be described as a shoe lace. Day after day, her surgeon squeezed and tightened the lace to slowly push it in. After a week it became apparent that it really wasn’t going anywhere. Hannah was taken to theatre. John and I went to the park across the road and then waited and waited. She returned some three hours later. It may sound strange but at no point did I ever doubt that she’d return to me alive. Her surgeon said that despite cutting her three ways to widen the opening, he hadn’t managed to get the liver in ( his main objective). Hannah has a silo attached to her abdomen and returned to the unit. The most painful part of this time was watching my beautiful girl crying silently, Hannah was still on full ventilation and morphine but very occasionally she would fight the sedative and briefly open her deep brown eyes. Immediately she would be given a bolus of morphine to knock her out again. On the unit, Exomphalos babies arrived, their Exomphalos were dropped in and off they went. Hannah became a member of a three -strong crew. Oscar the original member, very sadly passed away.

A week later, at exactly 2wks old, Hannah was taken to theatre for a skin graft, a technique not widely used. Slivers of skin were taken from her right thigh and placed over her Exomphalos. It was then a waiting game. The plastic surgeon said that some of the graft had taken, not as much as hoped for but better than nothing. Every couple of days from then on Hannah had her dressings changed. We then played a game of Russian roulette. Hannah was still on full ventilation and IV, central and arterial lines. She was still fully ventilated. All of this was needed to allow the graft to take but there was a risk, day by day, of infection setting in and taking her life. Hannah was, by this time absolutely bloated. Her whole body was retaining massive amounts of fluid and she looked like a Michelin man.

You learn to live with the machines, in fact, you need to be weaned off them when the time comes. They become the norm and the assurance. When Hannah was 3 weeks old, on full vent, wires and all, I held her for the first time. It was like coming home. My daughter felt otherwise. Not used to being handled, her heart rate escalated and sats dropped. She fought against me as the enemy to the norm and it hurt like hell. This was a trend to continue weeks later. The next day, inspired by my role as a real mum I returned to the hospital full of expectation. I was told that she’d contracted an infection in her lines and had a blood infection, to you and me, septicaemia. She was very pale, lifeless and the reassuring machines became my worst nightmare. I left that night and for the first time expected the worst. The morning after, although seriously ill ( SERIOUSNESS BECOMES RELATIVE!!) Hannah was on the mend. From that day on she picked up. Although she had rejected my expressed breast milk initially, she started to take it via the NG tube.

After five and a half weeks on ventilation Hannah decided that enough was enough. The plan had been to wean her off it over a number of days. The lines were to come out and she would start on C-PAP. I arrived at the unit to find Hannah in a proper cot, one line only and wriggling around in a hospital vest! She had pulled the vent tubes right out and was breathing on her own! The days after that become a blur of learning to breastfeed and watching the fluid literally seep out of her body. The nurses changed her bedding every 5 minutes for 12 hours as Hannah visibly shrunk! Her 8lb 13oz birth weight had not only lost the gained fluid but she had shrunk down to 7lb 7oz. The next day she was in room of the unit and I learnt how to care for my daughter as a real mum.

Despite a last minute hiccup of a chest infection, Hannah was ready to go home, wound, dressings and all and suddenly I had to get to Mothercare and equip myself for the child I never dared to hope I’d bring home! Hannah came home on 12th Sept 2002 and was readmitted 10 days later with a chest infection. This proved to be the pattern over the next 12 months. She is stronger now but still has regular respiratory infections. She coped wonderfully in 2004 with a 5hr operation to realign and defuse her skull and now we face the possible first stage of repair. All I can say is that my beautiful little fighter fills me with so much joy, every single day. She is a delightful, wilful and intelligent little girl, who just happens to have a special tummy.