Where to begin? 11 weeks into our pregnancy, a problem with one of the babies was discovered.
We had a scan, while on holiday in Poland. During the scan, the doctor said, there is a problem with one of your babies. From then on our holiday was turned into a research project, because of the results of the scan, we had a full amniocentesis performed.
We crammed in as many clinic and hospital appointments as we could, so that when we returned to Ireland we were armed with as much information as possible so that we could help our baby.
We had checkups approximately every two weeks until our doctor at the Rotunda Hospital decided it was time for the babies to be delivered or run the risk of losing one of them.
The babies were delivered the next day by caesarean section. Straight away they were separated, with Elie being taken away in an incubator to ICU, she was later transferred to the ICU in Our Lady’s Children’s Hospital, Crumlin. She spent the next nine months in Crumlin, as the doctors and nurses discovered a series of complications.
Elie proved to be a little fighter. She weighed only 1.74kg when she was born. She has been diagnosed with "Tracheo-Oesophageal Fistula with Long Gap Oesophageal Atresia." This means that Elie’s oesophagus does not join up with her stomach and so she is unable to swallow. This could not be repaired at the time because the gap was approximately 5 cm long.
Elie cannot swallow or eat, which is why she had an operation when she was one day old to place a gastronomy tube, so she could be fed directly into her stomach. She has a continuous suction tube in her nose that goes down her throat into an upper pouch in her oesophagus. This tube is helping Elie to not choke on her saliva and various other secretions.
Elie also had heart problems among other issues which have led to various operations. After several failed extubations she was diagnosed with severe posterior tracheomalacia and a tracheostomy was performed in December, 2010. After almost three months we were moved from ICU to the Transitional Care Unit. Finally she had a chance to have her first bath, spend some time with her twin sister and just ‘be.’ After so many weeks in intensive care it was like a breath of fresh air. Even with all of the things that Elie has been through she could finally be just a baby... as much as possible, with all of the tubes and wires that she needs to live.
Doctors hoped that the gap between the two ends of her oesophagus would get smaller but unfortunately that did not happen. After several months we decided to take her home to join her sister. We knew how enormous that challenge would be, but we did not see any other option. We wanted to have Elie home. Nine months on, Elie has been discharged from hospital, as far as we are aware she is the first baby in Ireland to be discharged with an un-repaired oesophagus.
To have both babies home is incredible, because we were told at the beginning Elie could be in hospital for as long as two years. To see them together, they are so excited to be in the same room. It’s like they have never been apart for that length of time. It’s amazing to just see them together.
Elie is at constant risk, infections are an enormous fear for us every day. As she gets older, she is becoming increasingly aware of the tubing in her nose and regularly tries to pull it out. This only increases the risk of aspiration and infection. She requires ours, and a trained carer’s constant supervision.
What does Elie need?
Elie requires surgical intervention to join the two ends of her oesophagus. Unfortunately her gap is too long and she cannot be treated in Ireland or in Europe. The only treatment available here would involve a replacement or pulling her stomach up, which would condemn Elie to a lifetime of medication and complications. This could lead to long term peg feeding, poor weight gain or anaemia. She would require multiple procedures and future hospitalisations, chronic reflux and respiratory problems together with tracheostomy issues. There is also very high risk of developing esophageal cancer.
There is an Oesophageal Advanced Treatment Center, in Boston, which uses the Foker technique. This procedure would allow Elie’s oesophagus to be repaired rather than replaced. This procedure is essentially the closest thing to a full cure and would give her a quality of life that would free her from the all complications associated with options available in Europe. We think that’s the only right choice for her to be healthy and not be disabled for the rest of her life.
Despite her trauma, she is the happiest child in the world; she deserves this chance to be healthy.
Doctors in Boston are satisfied that Elie is a good candidate for this surgery. Also, our Consultant Paediatric Surgeon is more than supportive that the Foker technique is the only viable option for Elie.