The little lives

Mara and Elisabeth's story

In 2009 my wife, Sabine, was carrying our first children, twin girls. They were due in the first week of September. Unfortunately she went into labour at the start of May after only 22 weeks 6 days. At that point it was expected she would deliver before the night was through and we would loose both of them. Our world fell apart. Despite this Sabine was determined not to let that happen. With the help of the fantastic staff on Wrexham Labour Ward and repeated doses of morphine she managed to hold on for 5 pain filled days.

On the first night we were told that if Sabine made it to 23 weeks there was only a 10% chance of survival, and if they did there was a 90% chance they would suffer some form of disability. They were sobering figures but we knew every extra hour Sabine hung on made a big difference to their chances.

At 23 weeks and 4 days our daughters entered the world. In addition to the midwife and nurses there were two teams from the Special Care Baby Unit (SCBU). Miraculously both of our girls came out pink and moving, so they stood a chance. As each was delivered the SCBU staff took over and got them stabilised before wheeling them straight into the Intensive Care Unit. Mara was 1lb 6.5oz and Elisabeth only 1lb 4.5oz.

It was a strangely deflating experience. Mara and Elisabeth had survived their birth but we hardly had time to see them and couldn’t event touch them before they were taken away. But again the staff were fantastic and gave us all the support we needed.

Once Sabine was strong enough we were taken into the SCBU to see our girls. It was quite daunting to see them inside the incubators, on ventilation, stuck with various needles and attached to a number of monitors. But they were alive. Over the weeks we got to know the staff really well and the friendly family atmosphere really helped. They were never too busy to answer our questions and actively encouraged us to get involved with the care of Mara and Elisabeth.

We were told it would be a rollercoaster ride of emotions and they weren’t wrong. Keeping them alive was a precarious balance overshadowed by the ever present threat of infection.

A few weeks later it became apparent that Mara was having serious difficulties. After suffering frequent bouts of infection, she was diagnosed with NEC, a bowel disorder that required an operation at Alder Hey. Her condition was so serious the medical staff were surprised when she survived both the transfer and the operation. The operation was unavoidable but it gave an infection she was suffering from a firm hold. She fought on bravely for a few more days but eventually her system was overwhelmed and we had to make the heart wrenching decision to let her go. Although Mara lived for only four short weeks she made a huge impact on our lives and we will always miss her. That same evening Sabine got to hold Elisabeth for the first time. It was a bitter sweet day.

Elisabeth stayed in Wrexham SCBU for seventeen weeks. It was a very stressful time of three steps forwards two steps back, accompanied always by the knowledge of the worst that could happen. It appeared that Elisabeth had suffered no developmental problems and we were looking forward to her being discharged, but then at the 11th hour it was discovered she had developed Hydrocephalus. The treatment would require brain surgery and a return trip to Alder Hey.

Fortunately Elisabeth had just passed the 2kg threshold for the surgery and the surgeons in the Neurosurgical Ward at Alder Hey took the decision to insert a shunt straight away. If all went well it would take some days for recovery so Sabine and I were found a room at the Ronald McDonald House, a free hostel at the hospital used to house family members, whether it be for days, weeks or months. Access to this facility made a huge difference.

After the surgery Elisabeth bounced back remarkably, despite a brief stint in intensive care. It was almost a shock when a few days later we were told we could go home. After all we had been through we would finally be able take our daughter to where she belonged.

Within weeks of the operation it became apparent there was a problem. A trip back to Alder Hey confirmed the Shunt had blocked, which was always a possibility in someone so small. This was corrected with a second operation on her brain. Since then Elisabeth has come on remarkably well. She is a wonderfully active little girl who has astounded all the medical professionals with her progress. And long may it continue.

Sabine and I cannot thank everyone involved enough for all the help and support we received. Our friends and family, work colleagues and the medical staff were all wonderful. Without them we wouldn’t have made it through and we wouldn’t have such a beautiful little daughter.