Eoin Padraig O’Brien

17/11/2009 – 18/11/2009

Eoin’s story

This is the story of Eoin, our third beautiful son.

I will never forget the day I found that I was pregnant with Eoin; I couldn’t keep the news to myself and “casually” phoned my husband in work and asked him would he be working late that night. Obviously, the excitement in my voice was apparent and he asked me had I good news to share. He answered that the news had just made his day. I calculated that my due date would be November 10th, and we were excited thinking of Santa leaving three sets of presents under the tree that Christmas!

I felt some pregnancy symptoms very early and joked with my husband that I was pregnant with twins. Indeed when we went for our 12 week scan, the consultant showed me our baby in the womb. I had just opened my mouth to ask where the other baby was when; he beat me to it and showed me another sac, with a tiny speck inside. He explained that at one stage I was pregnant with twins, but had had a very early miscarriage. I was shocked, and to be honest, I found it hard to come to terms with. On one hand, I was pregnant and had passed the danger time, pregnant with a healthy baby, and on the other hand I was grieving for a miscarriage. We talked about the other baby and felt that something must have been very wrong and it was obviously nature’s way. We also felt then, that our other baby must be ok, as otherwise, I would surely have miscarried both.

I was having a very normal pregnancy, with the ordinary niggles of morning sickness etc. Our consultant examined me just before our 20-week scan and felt that everything looked normal, with no obvious worries.  I remember being nervous before the 20 week scan and my husband was just looking forward to seeing our baby in detail. I still don’t know why I was nervous; maybe it was the experience of our 12-week scan. It wasn’t obvious to us during the scan that there were any problems, as the sonographer pointed out our babies face and feet. She asked us if we wanted to know the sex, and we replied no, we wanted it to be a surprise. Everything seemed on the surface to be similar to the scans of our other boys. It was only at the end that she dropped her bombshell. I  remember the feeling of my heart in my mouth. She said that our baby definitely had a cleft lip and palette, but there also seemed to be other abnormalities. She wanted to get a second opinion and left us alone in the room. I remember how frightened I was and I just started praying. I knew any news we got was not going to be good. Unfortunately there was nobody available to give us that second opinion, and our sonographer was reluctant to tell us what she suspected without some corroboration of her suspicions. A follow-up appointment was arranged for the following day at 4. Before we left, she said that I may also need an amniocentesis, and gave me some literature on them to read. She asked me what I knew about them, and I answered that they were used to check for Down’s syndrome. She replied yes and for other chromosomal abnormalities such as Patau and Edwards’s syndrome.  In that instant, I knew that she suspected that it was Edwards or Patau syndrome. We had never heard of either of them and we were in a state of shock and bewilderment. We were trying to second guess what she thought was wrong reading between the lines of what she had said and more importantly hadn’t said. We got home and rushed to the internet and pregnancy books and tried to get some information. I remember screaming when I read that they were fatal. Padi urged me to hold it together; my other boys were scared and crying. We were awake all night worrying and trying to second guess what we were going to hear. Hoping it wouldn’t be quite so bad. Please let our baby live. It doesn’t matter what his problems are, just let him live. Somehow we made it to 4 o’clock that afternoon. When we went to the reception desk and said that we had an appointment with the fetal medical specialist, another girl rushed up and asked us were we Orlaith and Padraig. Before we knew it, we were ushered into a private waiting area, complete with a box of tissues. We looked at each other, we knew then it was going to be the very worst news. Again, I could feel myself crumbling, my fantastic husband urged me to hold it together for our baby. We had to listen and pay attention to what we were going to be told. He was right of course, and somehow, we made it through. The specialist agreed with the original sonographer’s findings, and suspected our baby had Patau syndrome. Our hearts plummeted, as we knew from our brief research this was the worst news.  We asked to know the sex of the baby, as at that stage it seemed pointless not knowing. A boy. Our third beautiful boy. She arranged for an amniocenteses to be carried out the following day, and the results would be turned around in Glasgow within 3 days. We wanted to know why we should do this test. She said that it most likely was Patau syndrome, but if it was not, then more tests would need to be carried out to see what was wrong. At least then we would be prepared at the birth to deal with whatever issues there were. We agreed to the test and thought that it would be Monday at the earliest before we heard. During the test, our baby was quite uncooperative and moved over to the area that the specialist wanted to take the sample from. She applied a little pressure to my abdomen to get him to move back. He stood his ground and started punching back. A fighter! It brought a smile to our faces in a difficult time. We were dreading the long weekend looming ahead. In the end, the specialist rang us at 7pm on a Friday evening. She said that there was no easy way to tell us, but the results confirmed that our little boy had Patau syndrome. She arranged to meet us the following week to talk through our options. I was in the middle of bathing my other two boys, and I don’t know how I read them their bedtime story. The words were blurring in front of my eyes.

We were devastated. Our families were devastated. We both come from close knit families and for our parents to watch us suffer and also suffer themselves as grandparents was terrible. We were in shock, but most of all I was angry. Angry probably doesn’t even cover how I felt. I wanted to scream with the pain I was feeling. I couldn’t reconcile in my head that the baby I could feel kicking in my womb so strongly wasn’t going to live. We researched as much as we could, trying desperately to get some better prognosis. Everything we read said the same thing. Incompatible with life. We were grief stricken. We wrote a list of questions to discuss with the fetal medical specialist. We wanted to know whether it was full or partial trisomy 13. It was full trisomy 13. Padi wanted to know whether there would be any impact on me as a result of this pregnancy. I hadn’t even thought of that. Nor did I care to be honest.  We wanted to know whether there was anything congenital that would affect our other children. We wanted to know how pregnancies such as mine, normally pan out. We wanted to know would he suffer, and how he might die. The specialist was very patient with us. She explained that I should have a normal pregnancy, with maybe slightly more visits than usual to my obstetrician, particularly in the last trimester. She said that statistics weren’t readily available, but that almost 90% of babies with Patau syndrome would die within the womb. She suggested that it could happen at any stage, though usually in the third trimester. Sometimes the labour itself would be too much for the baby. She said that if we did make it all the way, he would probably be a small baby, maybe about 5lb. She said that if our baby was born alive, he would not be resuscitated, and instead would be offered palliative care to keep him free of pain. While he is the womb, he wouldn’t suffer.  She couldn’t guess how long he may live, it could be minutes, hour or days rather than weeks usually. He could die of heart failure if his heart wasn’t working properly, but more usually, he would suffer apnoea attacks, and would simply forget to breathe again. She suggested that we talk to the Paediatric team in Holles Street sometime in the third trimester, before his birth. We could then discuss his care at a time more close to the birth. It was also gently suggested on a few occasions that there were other options available to couples in our position in other countries. It was said that this was something we might want to consider, though our time to exercise that was limited.

We took all this on board. There wasn’t much doubt in our minds that we wished to continue with the pregnancy, though I sometimes wondered if I was being selfish, and maybe he would suffer more.  We named our son Eoin.

In our research on the internet, we had seen some photos of babies with both Patau and Edwards’s syndrome. We wondered what Eoin would look like. We decided to book a 3d scan, to see his face and we feared from the stark facts that the fetal medical specialist provided that it may be our only chance to see him alive. We were hoping that he would stay alive until then. This was a turning point in the pregnancy. It was so emotional seeing him carefree and obviously in no pain in the womb. He was like any other baby, stretching and yawning. He was a thumb sucker like our other two boys. It was great but also heartbreaking, as we feared that this may be the only time we would see him alive. At the end of the scan, the strangest thing happened. He was obviously trying to put the thumb back in the mouth, but for all intents and purposes, it looked like he was giving us thumbs up! That was a magical moment. We realised that if he was ok, then we were ok. I was still pregnant with a gorgeous boy, who was still very much alive. I could go to my bed and cry all day, or I could get up and enjoy every precious second of time I had with Eoin. No regrets was our mantra. In difficult times, you realise who your true friends are. Our friends and family were terrific. Their unflinching support got us through many a low day.

My obstetrician, Declan Keane, who had been on his holidays when we had our scan, met us immediately on his return. He has looked after me on all my pregnancies and he was visibly upset on meeting us. We told him that we knew we couldn’t change the prognosis, but that we had one hope, to hold our beautiful son Eoin in our arms and tell him how much we loved him.  I asked him to manage my pregnancy in such a way to help us realise this dream. He promised that he would do all he could. He also promised that if he could see signs that Eoin may be slipping away from us, he would let us know. I felt that I would go full term; I seem to grow my boys big and make them too comfortable in there, as I had to be induced on my two previous pregnancies. I also told him that there was no way that I would have a 5lb baby. My pregnancy continued uneventfully, with Eoin continuing to grow in a normal manner. The estimated birth weights kept going up and up and I had to return some clothes that I had bought for him a few times, Slowly, there was a belief that I would go full term. It was suggested that I meet a bereavement counsellor in the hospital. I think in hindsight, I wasn’t ready for this, as I was focussed on my goal and not ready to deal with the practicalities of Eoin dying. I also asked to speak to the paediatric team and I found this very useful, as they explained what would happen at the birth. It was gently explained that a lot would depend on Eoin’s condition at birth. I think when you are dealing with a lot of unknowns and many different possible outcomes, we found it comforting to get as much information and make plans for every eventuality.  We were also quite concerned with how we would tell our oldest son, Cillian who was 3 at the time. It was hard to tell him what was happening, when we didn’t even know ourselves. We left it until the end, when it was apparent that I would go full term, and explained that Eoin’s body was so broken that the Doctors couldn’t fix it. We explained that he would die in a little while, and would go to live in Heaven. This he accepted.

Towards the end of my pregnancy, I was very big and there was almost twice the amount of fluid around Eoin than normal in the womb. This is quite common with Patau syndrome. When we went past my due date, I was getting nervous, and was worried that things would start breaking down. It was agreed that I would be induced at one week over. On the morning of my induction, very high levels of protein were found in my urine, and I think that this just reinforced my belief that it was time. Whilst we knew that it was the beginning of the end, we were also excited to finally get to meet our son. We had a fantastic midwife Michelle, who was so kind to us in Unit 3 in Holles Street. She arranged for us to meet one of the chaplains, a lovely nun……Her calmness and kindness was a huge lift to us and helped us through.

Eoin Padraig O’Brien was born on 17th November 2009 at 7.09pm weighing in at a fine 7lb 8 oz. It was immediately apparent that he wasn’t in great shape. I wasn’t convinced that he was alive, until they showed me his arm moving. We knew our time with him would be brief. Luckily, I had a very quick and easy labour, as I am not sure that he would have survived otherwise. Eoin was born with 10 fingers and toes, and the most beautiful soft silky skin imaginable. There wasn’t a mark on him from the birth. The only obvious defect was his cleft lip and palette. He also had the most amazing hair, dark roots and blonde tips!

It was suggested that we should ring our families and try to get them in quickly. Our families arrived in very soon after Eoin’s birth and the nursing staff arranged a beautiful christening. They even arranged for coffee and biscuits so we had our own party with him! He got to meet his two older brothers which we are so thankful for. We have our family photo complete with dirty faces and nobody even looking at the camera, but it is precious to us. About two hours in, he took a little turn, and everybody was asked to leave the room. We willed him to keep on fighting and our little fighter did. He saw in a new day and was tube fed by his daddy, before he took another turn. This time I knew it was time, and he passed away very peacefully, in our arms after six and a half hours of life.

We are so proud to be the parents of an amazing, strong and brave little boy. Whilst we are devastated by the loss of our son, we are so grateful for those six and a half precious hours, and of course my nine and a bit months of pregnancy. He is an important part of our family and we are thankful for all the love and happiness he brought to our lives.

Orlaith O’Brien

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