The words of this article have been spinning around in my head for quite some time; amongst grief and loss and making sense of life again. It took a lovely chance meeting at the school gate with one of the wonderful midwives who took care of me during Bobby’s journey in the Coombe this year for me to finally commit the words to paper.
Our determined, courageous and beautiful son passed away on June 4th, seven hours after he was born. A heart-shattering and life changing day that we got through with the arms of doctors, midwives, bereavement counsellors and family wrapped warmly and firmly around us. Bobby had been diagnosed with a life threatening birth defect in the Coombe on March 1st at his 21 week scan. I often feel so incredibly frustrated with the universe when I think back to how simple, wonderful and joyful life was before that awful scan; and it will never be quite the same again. Our world changed in an instant and we boarded a rocky train journey no one wants to take; one that requires strength and hope that you have to squeeze out of places you didn’t know existed. Bobby was diagnosed with CDH, Congenital Diaphragmatic Hernia; a birth defect that occurs in approximately 1 in every 2,500 births and its cause is not yet known. CDH occurs when the diaphragm fails to form or to close totally, and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. Roughly 50 per cent of babies born with CDH do not survive. CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is little research being done and virtually no media coverage. Bobby’s hernia was a right sided hernia, which has a poorer outcome. So we were given a 25 per cent chance initially.
Our journey to have children started back in 2010 when we experienced our first miscarriage. We were so incredibly blessed when our clever, kind and gorgeous red headed daughter Lily arrived in 2012, and what joy she has brought to our lives. Bobby Fortune was a much wanted second child and our journey to have him was incredibly difficult; during 2014 and 2015 there where heartbeats there, gone and grieved for. To prevent further loss, we crossed so many T’s and dotted so many I’s through IVF with implantation screening; the shock of hearing there was something wrong on March 1st was breathtakingly enormous. I remember trying desperately to sleep that night; but it was a night of fear, devastation and disbelief.
March 1st marks not only the heart-breaking reality of knowing your son was facing life or death but it was also a day we embarked on a relationship of advocacy, support, warmth, hard facts when needed and incredible empathy; the relationship with our wonderful obstetrician who helped us through the worst months of our lives. There are so many things I could say about Deirdre but I wouldn’t even know where to start. They say strong people stand up for themselves but the strongest stand up for others and this was quite simply what she did.
I quickly became part of global CDH Facebook groups trying to wrap my head around this defect, what my son was facing and what we could do to help his prognosis. There was nothing we would not have done for our son. Deirdre was a generous listener, never once tiring of my on-going questions, and there were many. She embraced our need for second opinions with no offence or judgement or damaged ego.
What would you do if this was your child? This was the question I truly believe changed the course of Bobby’s journey when we had a lot of hope. It is what I asked Deirdre to ask her colleagues. There was no treatment for Bobby in Ireland and she had mentioned there was a doctor who had worked with many CDH cases previously in Prague. I wanted her to ask him what he would do if this was his child. She did and suddenly there was a plan and hope and a way forward. I know this simple question made the difference. We were swiftly boarding a plane to Brussels to see CDH experts who were performing in utero surgery to help the lungs overcome the impact of organs developing in the chest cavity, a procedure called FETO.
The process to obtain treatment abroad funding through the HSE was not easy for a pregnant mother facing a difficult diagnosis, yet that is what I faced. Deirdre was so generous with her time and supported me wherever possible to get this funding. I am so incredibly proud that my son’s awful journey has resulted in a change in this HSE policy to allow the maternity hospitals to approve the FETO surgery without a lengthy stressful process for the mother.
The team in Brussels welcomed us with such warmth and compassion yet gave us the brutal facts. We were incredibly relieved to hear that they would accept Bobby’s case and would perform in utero surgery. We knew it increased his chances to 50 per cent; and we were grasping on desperately to every little extra chance for Bobby to live. Hope is what kept us going; it gave us the gas in the tank to survive. Having the surgery meant we had to move our lives and our daughter to Brussels for two months and an additional procedure eight weeks later to remove the little balloon that would be placed in Bobby’s lungs to help them grow. We had schedules for family and friends to visit and support. Sadly when we returned later to Brussels for the surgery, Bobby was so incredibly unlucky. He had started to develop hydrops, a life-threatening condition of severe oedema (swelling) that occurs in babies and new-born. The surgery could not proceed. We have almost erased this awful moment from our memories; it’s hard to describe the heartache of having to turn around and go back home without that 50 per cent survival chance to which we were clinging so desperately. The team in Brussels sat with us, put their arms around me and told us Bobby’s chances were significantly lowered.
We returned to Ireland and continued on our journey with the Coombe; weekly scans with the fetal medicine team and reviews with our obstetrician. I was admitted at 32 weeks with signs of labour and spent six days in the hospital. I had developed polyhydramnios, which is not uncommon in mothers with CDH babies where an abnormal build-up of amniotic fluid builds. This required a procedure to have some of my amniotic fluid drained as well as some of the fluid in poor Bobby’s tummy. There were times I felt my fetal specialist had no filter, yet he was always incredibly warm, empathic and calming. I spent time on a ward where all women go who are facing miscarriage, still birth or pregnancies with poor or guarded outcomes. The humanity and care I experienced in this time was a humbling life lesson about compassion, empathy and how to care for others in devastating times. I used to ask the midwives how they coped, taking care of women every day who were on such shattering journeys. They would sit with me, make me feel normal and laugh about how incredibly active Bobby was or just talk about small things with a bit of gossip thrown in. They were kind and generous listeners and got me through each day to the next. There was never a cross word or a lack of patience; not even when I asked for brown bread instead of white! Bobby decided he was coming when I was 34 weeks and two days, and I have never been so afraid. It was the June bank holiday weekend, sadly my consultant was away and nothing was as it was supposed to be. A large team was quickly assembled to bring Bobby into this world by caesarean section in an effort to save his life. My parents made a very quick dash to the hospital to be there for Des and I; it’s amazing how much you just want your parents there in the worst of times. We can only imagine how difficult it was for them. My sisters scrambled from where they were around the country to get a glimpse of this special boy. I can’t imagine how difficult those journeys were. Mary, who delivered Bobby, was the best replacement obstetrician you could ask for; she was incredibly disappointed for me that Deirdre could not be with us, yet she was wonderful in my eyes. So many strangers held my hand; the on call neonatologist I had never met told me he would do everything he could to save Bobby’s life. My calm and wonderful husband held my hand tightly with such love and bravery as Bobby cried and was taken away by the medical team who worked on Bobby to ventilate him. My son was incredibly well cared for; everything was done to try to save him. Bobby was transferred to the NICU where coincidently a wonderful neonatologist Pamela, who had taken care of Lily when she was born, worked tirelessly to save Bobby; she was incredibly warm and kind to us and to our family. The hospital Chaplain joined us to support us through this traumatic day and took pictures of Bobby, none of which we remember her doing. She was kind and loving, unassuming and compassionate to both us and my family. She subsequently led our ceremony so beautifully to say goodbye to Bobby at Mount Jerome. A team of midwives cared for and supported me along with my mother as I tried to recover, waiting desperately for news from the NICU where Des was being supported by my father. Bobby’s lungs sadly did not match his terrific spirit and he passed away in my arms with my husband by my side and my family surrounding us. I know everyone who took care of us in these months and days grieved his loss. We spent five days with Bobby; an incredibly difficult time that just felt so wrong, we should have been bringing our son home. Nurses and doctors were so generous with their time; sitting with us and talking about Bobby’s short life. The day after Bobby died, a wonderful Now I Lay Me Down To Sleep photographer arrived to take the most precious photos we will ever have; it was one of the most difficult things we have ever had to do. We will be forever grateful to this amazing charity. Feileacain provided us with a cuddle cot and we got to spend these precious yet unbelievably difficult days with our son and they continue to support us. The bereavement team in the Coombe dressed Bobby, talked to him and told him how beautiful he was; he was just perfect.
This was our experience and one that I will take with me for the rest of my life. To those who haven’t had our experience, I can only imagine how torturous this was for you during the most difficult days you will ever face. I am in awe that you are still standing because frankly it is the human experience that we witnessed that helps us take steps each day.
I recently read Dr Jacky Jones’ article in the Irish Times and her thoughts on the Irish maternity services. To her mother, my heart aches for you and to the Ireland of our mothers and grandmothers who were denied time with their babies and who silently put one foot in front of the other for the rest of their lives. And here we are 40 years later, and we still haven’t got it right. The new HSE guidelines for Pregnancy Loss and Perinatal Death clearly define the care parents and families can expect to receive following a pregnancy loss or perinatal death. For me it is so much more than that; it is the human beings behind them that will ensure that people experience a compassionate one all over the country.
Sadly we will never have a perfect world for parents who will experience miscarriage and perinatal death. Parenting, teaching and enabling better soft skills training in hospitals and medical training may help bridge the gap and we all have a role to play.
To the doctors, midwives, bereavement teams and nurses currently working in maternity hospitals; please understand the impact of your words to people as they face loss or guarded outcomes head on. Many of you get it so right, but some of you get it wrong. Slow down and listen; kindness gets people through the darkest days of their lives. If you face difficulty not knowing quite what to do or say, ask parents what you can do to help them.
To parents and teachers all over the country, it is our duty to rear and teach our children to be kind, empathetic and patient. As the wonderful Brene Brown so simply tells us, be the adult you want your children to be and be a model of kindness, empathy and patience to them. Show your kids what great listening is and the importance of compassion. Some of us are rearing the next set of medical staff in the maternity services, and we owe it to future bereaved families to ensure they feel those warm arms around them during the worst days they will ever face.