John Paul’s Story.
He lived for 17 minutes with Anencephaly
Describe your situation at the time of your pregnancy and your child’s diagnosis.
On July 19th 2006, my husband and I went for my 22 week scan. We had decided we were going to find out the sex of the baby this time – something we had not done before. We had 4 girls at home and 1 boy who really wanted a brother. My husband and I just wanted a healthy baby. But that was not to be – not this time.
Within a minute of commencing the scan, the midwife saw that not all was well. She told us she was so sorry but the news was not good – this child would not survive for long. Immediately she went to find the master of the scanning dept to come and give us an official diagnosis. Those few minutes of waiting were like an eternity. “What does this mean? Will our baby die? Will it be imminent or will we have some time together? Will he/she be severaly handicapped?…” The Master came and answered all our questions. Our baby had Anencephaly – a condition which means his brain did not fully develop and therefore he could not survive for long after birth, if he even made it that far. He told us that the baby could die any time but would certainly die shortly after birth. He also told us that our baby was a boy – our son’s long awaited brother!
Needless to say we were shell-shocked! It was like a gong booming in our world, our reality had just been thrown up in the air and all we knew was that when all the pieces landed again, there would be no getting away from the fact that our child was going to die, soon. We went away and sat in shock for a while. Our family were minding our other kids so we trespassed on their generosity a little longer and went for a coffee. In the midst of the blow, one thing was clear to both of us – Our time is short. We want to make the most of his short life. We want to try to give him as much love as we can in the days ahead, since we only have a small window in which to give him a whole lifetime’s worth of love. There and then we named him – John Paul, after his Dad. This was my husband’s suggestion and I found comfort in knowing that we were welcoming this child together. I was not alone.
The next couple of days were a blur of broken sleep with nightmares, waking up and finding the nightmare was actually reality, the routine of looking after my other kids, the job of telling them the bad news about their little brother, telling the rest of the family. I had a sister and a sister-in-law who were both pregnant and expecting babies at around the same time as John Paul. I knew it would be hard on them too!
After a few days of the world having seemed to turn upside-down, the new reality started to settle in and with that came a new sense of direction for me as a mother and for us as a family – We knew the time was short but we didn’t know when John Paul would die so we realised that our greatest hope was that he would survive till birth and that we would get an opportunity to meet him. We began to hope and plan for this. We also made plans for what would happen if he died in the womb. Now the picture was not so uncertain anymore. We had time and warning. We could give him everything possible in the next few weeks until it was no longer possible.
I found during this time that I was surprised by the joy of each new day that I woke up and found him kicking, making his presence known. During this time I learnt to live in the moment more than I usually would because I was so grateful that this moment I had him with me and each moment was a bonus. In a strange way I had never enjoyed a pregnancy so much before, because usually I would have been looking ahead to the birth rather than appreciating each day of the pregnancy. Another amazing thing that took us by surprise was the love, care and support of our wider family and friends. People thought of the most beautiful things to do for us and for John Paul e.g. My mother-in-law got my 2 daughters and their 3 cousins to each knit a portion of a little blue cardigan, which she then put together for him to wear when he was born. My son was going to be clothed in love, even if just for a short time and not just our love but the love of many people around him. It was such a joy to me to know that many others were joining us in giving him as much love as possible. Our kids were full of affection for him, talking to him and hugging him each day too.
I was fortunate enough to know 2 other women who had babies that had died shortly after birth a couple of years before. I spent time with each of them and heard their stories and their ideas – what they found helped make their time with their little ones precious. This was invaluable to me and I used ideas from both of them in our short time with John Paul.
Also during this time the hospital were so good to us. We were part of the community midwives program which is a service already dedicated to allowing a more personal approach to childbirth while under the umbrella and the care of the hospital. This program is a wonderful program and because of my special needs in John Paul’s case, the midwives were able to care for me and John Paul in a very personal way. For example, they came to my home for visits to avoid me having to wait with other mum’s who had healthy babies’. They always let me listen to his heartbeat for a minute or two on each visit (the heartbeat was always so healthy) which my husband recorded on one occasion. They made sure I knew exactly what to expect and what the odds were but always referred to John Paul by his name, giving him the respect of acknowledging him as a valuable person. All these small things made a very big difference in having the strength to walk the difficult path.
The master of the scanning dept Invited us back at 32 weeks for another follow up scan, to monitor John Paul’s development and he told us to bring all the kids with us. He spent 45 minutes with us and after the official checks he needed to make, he let the kids dictate the scan from there – he asked each of them what part of their brother they wanted to see. Nothing was too much trouble and the kids were very amused when he showed them proof that he was a boy! In effect, he facilitated my children ‘meeting’ John Paul for the first time and since we had no guarantee if they would meet him alive at all, this meant so much to us.
I began to labour at 36 weeks. It started and stopped over a period of a few days which I think was due to my uncertainty and trepidation. Eventually on the morning of nov 2, contractions began again and I headed into the hospital. After a few hours it all stopped again and I remember feeling very frustrated because I’d psyche myself up, take a deep breath and think we were going to get on with this difficult task and then it would all stop. This was quite hard. But then I remembered also all the moments I’d already had with John Paul and how I valued them and I realised that this was my last journey with him! I didn’t want to rush it. If it was going to progress at a gentle pace then I would settle in for the ride. My moments with him were now really limited and I had no desire to rush them. So after that the labour became a lot more peaceful. It gradually built up at a gentle pace which I am very glad of now looking back on it. When John Paul was born, it was late at night and all was quiet and peaceful. We had the use of the community midwives room for the whole labour and birth so we could really treasure the moments. He lived for 17 minutes after he was born and passed away peacefully when my husband cut the chord. But all our hopes for him had been accomplished. We had met him, told him we loved him, held him, baptised him and so we could let him go on in peace now.
Again the hospital outdid themselves in facilitating us. My parents had been looking after our other kids and they all, along with JP’s parents and some of our brothers and sisters were allowed in to us in the delivery room because the time was going to be so short. So many of our family got to meet John Paul and love him with us.
While 17 minutes might seem like a very short time, it is etched into our hearts forever. It has been such a gift to look back during our time of suffering and loss and remember those precious peaceful moments. To know that we held onto and loved John Paul for as long as we could and then let him go when the time was right, has been such a comfort in the pain of losing him. This is what all parents really want to do for all their children – to be there for them when they need it and to let them move on to greater things when the time is right. I realised reflecting on John Paul’s life that this was no different. It all just happened in a much shorter amount of time.
What advice were you given at the time?
Very little ‘advice’ was given at the time of our diagnosis. A lot of sympathy and compassion were given. The consultant began to explain to me that I had 2 options. I had just heard that my child’s life, instead of stretching out indefinitely before us, was going to be limited to a very short amount of time. I felt like even this short time was threatened by the talk of the possibility of travelling to terminate the pregnancy, so I asked him not to talk about it. He explained, however, that he was required to give me all my options, so I understood. He did this and saw that we had already made up our minds that this was not even a consideration for us, so he made it clear that he and the hospital would do all that they could to care for us in the weeks and months ahead.
What were your emotions at the time? Did your emotions or attitude change once the baby was born or over time?
When we first got the diagnosos, I was shocked and horrified, though not utterly surprised. I’d had a gut feeling that there was going to be something very different about this pregnancy from my previous ones and I couldn’t explain why, so now I understood why I had had this feeling. As I already described, it took a few nightmarish days to let the truth of the situation dawn on me but I came out of that with the resolve that from there on we would make the most of every day we had our son. My emotions changed over time. There was huge apprehension approaching the birth, mixed with the joy that he was still alive. It was like an emotional roller-coaster. But in general, it can be said that while we had John Paul, we wanted to make it all about him – make the most of every day, celebrate him, so to an extent I was putting my own pain aside for a time, although unwittingly.
For me then, the real pain of grief, sorrow and hopelessness came after he had died and after all was said and done. I was now left to process all that happened and it was awful. Nothing could have prepared me for the pain of this type of grief. So from that point it’s been a journey towards healing. This journey has involved anger, extreme pain, many tears followed by relief, then the whole process staring again. Sometimes it’s involved a time of feeling numb and then angry all over again. But one thing which has been hugely significant is that in the midst of the pain I have the memories of the precious time we had with John Paul and that has been of great comfort.
Where did you find help / information?
The amazing support of my family, friends and the hospital staff.
I have suffered for sure at the death of my baby but I have precious memories of him to hold onto for life. When I put myself back at that moment of diagnosis, I realise that no matter what happened from there, the future held my child passing on and me left to grieve him. This was unavoidable. So the only choice I really had is what role I would play in his short life and what role I would play in his death. This choice has been crucial for my own healing. When I look back, I not only have pain but peace and beautiful memories to give me comfort and assist with healing. If I had had an abortion, I think I would be trying to forget instead of being free to remember. Our family wouldn’t be celebrating his birthday every year and the fact that he is still part of us and always will be. I think I would be plagued by questions about what could have been and I think healing from such an experience would have been a lot more complex.
What would you say to parents out there who have been given a similar diagnosis for their baby?
Firstly, I’d like to say I am so sorry for anyone who finds themselves in this situation. The sad reality is that no matter what happens from here, your baby will die at some point in the far too near future and that is truly tragic.
While the death of your child is part of the path ahead, there are many moments of life also to be had along the way. To be able to remember the birth date of your child and keep mementos is invaluable, as is having a memorial stone/grave to visit as a special place to remember and talk to your child. I have found these small but deeply significant things to be invaluable and I would wish them for any woman who finds herself in this situation.
Thirdly, it is my observation that every child has something unique to bring into the world and also that each child has some handicap, be it small (shyness/lack of confidence) or big (mental/physical). As parents, what we want is to be there to celebrate and show how proud we are of our kids in their strengths and to support them in their weaknesses. There is joy to be had out of both and sometimes more joy to be had out of the latter. With a child like this, the same applies. The handicap is much greater than anything you may have experienced before but there is a distinct joy to be had from being there for every day of your child’s life that you can be there. Also even this child can bring some good into the world and change the shape of a family for the good. I found this in a profound way with my son.
The long term effects it has had on my family because of the closeness we experienced and because of the things I learnt in grieving him are things I wouldn’t swap for the world. They are part of the story of John Paul. He has had a hugely positive influence on myself, my husband and our children. He has even had an impact on our wider family and friends and I am so proud of him for this. He has made his mark on the world.
We are just average people. There’s nothing extra-special about us but when something like this happens to you, it brings the extra special with it if you are willing to take the pain.
Finally, death is part of life. We know this to be the case. We try to live life to the full and accept the inevitability of death along the way. So in accepting this life, short as it may be, you would be doing just that, accepting life, limited as it is. But in choosing to end this life you are sacrificing the life part of the journey. This is a huge sacrifice and could be more costly than you realise.
Was there anybody or anything in particular that helped you at the time?
Aside from the wonderful support of family, friends and hospital staff, which I described above, my faith in God’s love has been a big help. I realised that if He sent this child to me, He would give me what I needed to be his mother. He has done that and much more.
