The Facts About ECMO Babies
BETWEEN the years of June 2006 and January 2009 Holles Street Maternity Hospital sent eleven babies for ECMO treatment. Sadly, four babies died. One baby did not require the ECMO treatment after consultation. Another didn’t survive long enough for the team to put them on ECMO sadly. So the survival rate was over 50%.
What is ECMO? Extracorporeal Membrane Oxygenation – a complex technique that provides life support in neonatal respiratory failure. ECMO maintains blood flow and oxygenation to the vital organs, so that the function of these organs are maintained while the heart or the lungs recover. Babies born in Ireland are currently referred to clinics over seas, usually the UK or Scandinavia. In our case, it was Copenhagen in Denmark.
So how does this treatment work? The ECMO machine provides life support in respiratory failure by oxygenating the blood outside the body, thereby facilitating lung recovery and can provide cardiovascular support if necessary. In laymans terms it’s like a big washing machine! Four of the infants were born with the respiratory problem called Meconium Aspiration Syndrome (MAS). My son was one of these babies – he had inhaled the meconium which is a toffee-like substance and it closed his lungs, making him unable to breathe properly. In the womb it made no difference but as soon as he was born, he took one breath and that was it.
If a baby is born with a congenital heart defect, ECMO is available for that baby in Our Lady’s Hospital Crumlin for Children. It is solely for that purpose, yet for any respiratory defects these babies are sent abroad. This decreases their chance of survival greatly rate and reduces their chance of full normal recovery.
If the new children’s hospital is built this may be an option to expand the ECMO unit to accommodate respiratory and heart defect patients. The cost to the HSE to send each baby abroad for ECMO is €25,000 for transfer and €9,000 per day thereafter. The total cost of the period of two and a half years was over a million euro to the Irish government. So the question will remain will it be financially viable to have this treatment available in Ireland? As a parent who experienced this upheaval when my son was born to us, financially yes it would. Although our son was transferred by the HSE we had to incur our own travel costs to and from Denmark and then three weeks of parking fees, food and all the basics while he spent the remaining time in Holles Street ICU.
My experience with ECMO began 7 years ago when our lives completely changed drastically. A normal pregnancy turned into emotional pain that we never thought we would experience. Matthew was born weighing 9lbs and 8oz, a good size baby 9 days overdue so he was well-cooked. He was an easy birth with a short labour – it was all too good to be true. They lay Matthew on my chest and he took one breath, that’s all he could manage and he was whisked off me. Suddenly a sea of doctors surrounded him trying to resuscitate and suction him to come round. I kept waiting to hear the cry, the cry every mother loves to hear when their child is born. It’s the only time we want to pinch them, just to make sure they are breathing. But it wasn’t going to work with Matthew. Every baby has a bit of meconium in their throats or thereabouts but Matthew had inhaled it and his lungs were completely closed and was taken to ICU.
We were left alone and devastated – my husband and I not knowing what was happening. Was he alive or dead? But it was more important to get Matthew stable than to wipe our tears. So we waited together talking, crying and praying. Utter disbelief of what had just happened, this only happened in films or in another country, not in little old Ireland. Not to ordinary people. Matthew was born at 10.40am and we only got to see him after three o’clock that afternoon. Exhausted from thinking of every scenario that was happening, we finally got to speak with the doctors.
The diagnosis: Matthew had MAS and the only treatment they could offer now was in another country like Sweden or Denmark. I couldn’t digest this information, it honestly made no sense to me but my husband agreed to any treatment anywhere around the world once it gave him a fighting chance. My reaction was how can we go to Sweden or wherever we had nothing packed, no passports. It just seemed ridiculous. Add to the fact I’m a dreadful traveller and also that we also had a two-year-old daughter at home to bring too. So it was agreed they had found a bed in Copenhagen for Matthew. A team would come and put Matthew on the ECMO machine because he could not be transported any other way. If he stopped breathing again, there was nothing more they could do. So the problem was would he hold on long enough? The team were to arrive at midnight all the way from Sweden – an amazing set up that they provide. They usually arrive within an 8-13 hour time frame.
The Department of Foreign Affairs sent a representative to Holles Street to organise a passport for Matthew at 2am that morning, an amazing service. As sick as he was, no passport no flight! Matthew’s oxygen levels were so low, myself and my husband stood over the machine willing it to go up another level. His oxygen levels were in the low 30s, if not lower. We willed him with everything and I prayed like never before for him to hold on.
A little after midnight I saw the most amazing sight as the lights were turned up in the ICU and this team of five amazing people walked into the ICU. They were dressed in what looked like snow or ski suits. They had arrived at Dublin airport in an air ambulance. Honestly it was a cinematic experience watching them strut with such confidence towards us. The main leader Pallas was amazed at the size of Matthew as most of the babies you see in ICU are tiny, some premature and almost see-through. Then you see this big child flaked out with tubes connected to him everywhere, he was certainly a contrast to the others. Pallas kissed Matthew like a granddad would and assured me not to worry. Easier said than done! Because Matthew had held on for them, they decide to make sure he was a good candidate for the ECMO and waited a few hours to see if his oxygen would increase on its own. Matthew maintained but it didn’t increase so early that morning, the decision was made that they would hook him up to the ECMO machine and transport him to Copenhagen.
It took a few ambulances to transport the five team members, Matthew and the machine to Dublin Airport and onto Copenhagen. I was leaving my son’s life in the hands of these strangers. It’s amazing what you will do just to have your child live. It was a very sad moment watching them pull away from Holles Street and have people looking at you wondering what was going on. Honestly to this day, the most memorable feeling was like someone had tied my heart to the ambulance and as it drove off with my son inside in, it broke my heart in two.
So we drove home with an empty car, any parents who had that experience will know the empty baby car seat brings such an eerie feeling of unease and questions. We spoke with the hospital that night in Copenhagen and told us Matthew was comfortable and still on the ECMO and would remain so for the next week or so. The usual timeframe for a baby on ECMO can be anything up to 9 days. We arrived at 1 o’clock Sunday morning and were ushered into a room with Matthew lying there on the machine. I couldn’t process this image and turned to walk out, I couldn’t register that he was my baby as I had held him for only a second and that was it. We hadn’t bonded yet and with the trauma of his birth, travelling and everything else I could not cope.
The next day I came round and went into automatic mother mode and insisted on doing everything for him, tube-feeding, changing nappies etc. Matthew began to improve and in a week, he was to be taken off the ECMO machine. Now he had a brain scan which showed black areas which could mean brain damage but at this stage we were willing to take him anyway we could get him.
Matthew became well enough to go back to Ireland but would have another few weeks in Holles Street before he would eventually come home. He came home and went from strength to strength and graduated to each section of ICU where babies needed less medical treatment. We were feeling quite exhausted after three weeks of up and down to Holles Street every day and night, it was taking its toll on us all.
On one fateful morning I walked into the ICU and stood beside Matthew and could not figure out what was different? It was the first time since he was born I had seen his whole face. No feeding tube, no oxygen tubes, just his little pudgy face glowing. The nurses were as excited as I was. I even remember a nurse walking past me on our first week back in Holles Street. I said hello to her and she nodded at me. She then back tracked and asked me was that the baby sent for ECMO? I told her it was; her reply “Oh my god I thought he died”. You would expect me to be mad but I just laughed and replied that he wasn’t going anywhere. She hugged me and wished us luck. It was a milestone in my life; and better still, no brain damage. He was clear and he was as normal as a little boy can be! We could finally start living and bring our little boy home.
It still amazes me when I come across family GPs and other medical personnel who have never heard of ECMO or an ECMO baby, it just proves how rare it is – even still. I would love to see the ECMO available to all babies in Ireland for respiratory and heart defects. I hope they see it financially and emotionally viable to develop this unit in the new children’s hospital. Studies have been done that infants treated with ECMO compared to conventional therapies had lower respiratory morbidities that required less hospitalisations and less behavioural problems requiring community health interventions. It will benefit many families and save many lives in the long run.
Photos c/o openforumevents.co.uk, wisegeek.com, birminghamobserver.com