What would you do if this was your child?

Bobby sand

What would you do if this was your child? This was a powerful question I truly believe changed the course of Bobby’s journey at earlier stages when we had a lot of hope.  Last week, almost 11 weeks on from Bobby’s death,  I scrambled into the Insomnia coffee shop at the top of Grafton street before Lily and I were to board the Viking Splash with my friend Aoife and her son. That Justin Bieber song ‘Where are you now’ was playing; a song that brings endless tears when I hear it. My heart aches to know where Bobby is right now.

It brought me right back to March 12th when my obstetrician Deirdre had called me, as I sat in that same Insomnia coffee shop with Aoife, to see had we left the country.   I had come into town that day quite literally dragged myself along with a smile on my face hand in hand with Lily. She knew nothing of the utter anguish I felt every day of my pregnancy from the moment of Bobby’s diagnosis. My heart was broken. Deirdre obviously knew us well by then; there was nothing we wouldn’t do for our son. Back then, Des and I had just sought a second opinion  at 22 weeks following Bobby’s CDH diagnosis. I had queried the lack of lung bypass treatment readily available in Ireland. During the second opinion, our doctor had outlined the criteria for lung bypass (known as ECMO) and that Bobby may not even qualify. I then asked him that question ‘What would you do if this was your child’. And there it happened; it humanised our son and our doctor changed his answer. He would ensure his child was born where ECMO treatment was available. We had gone back to Deirdre all guns blazing wanting to move country; she managed to talk sense into us, for a short while. I urged Deirdre to ask her colleague that question;  a doctor she had mentioned had worked with many CDH cases previously in Prague. Please ask him what would he do if this was his child?

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I told Deirdre I was still in Dublin. And suddenly there was a plan. Deirdre had spoken to her colleague, asked him my question and suddenly there was a way forward! The tears streamed down my face. It was a Saturday; Deirdre was on call and she had had a lengthy discussion about our case. And now we were going to Belgium to see a CDH expert. I will never forget that moment, that feeling of hope, of feeling heard and it all went back to that question. Its a question I went on to use throughout Bobby’s journey; its a question I urge any parent with a sick child. Its a question I will never forget for the rest of my life. Its one of Bobby’s many footprints and I am so grateful to my own mother who always taught me to question things medically when in my heart I felt stones were left unturned.

Mommy I want Bobby

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Its August 13th and we lost Bobby 10 weeks ago today. My beautiful, feisty and courageous daughter came up the stairs today to tell me she needed me and how she wanted Bobby. I know that ache, I feel it every single day and today I could feel her little ache. And I could do nothing for her but tell her I loved her and that I understood. We went downstairs and we hugged. And she said it again, Mommy I want Bobby. So I did what people do for me, I followed her lead and I didn’t change the course of the conversation; even though I wanted to.

I followed my intuition and I asked her would she like to see his photos; other than a beautiful canvas of Bobby given to us by dear friends, Lily had not seen any. My heart told me this would give her some comfort. I showed her the picture of the moment she met him for the first time; right after we had told her that he had died and given her the choice to see him or not. I showed her the picture of Bobby in his parent’s arms, alive before he died. She had never seen him alive. I showed her the beautiful pictures that the wonderful charity Now I lay Me Down To Sleep Ireland captured for us; the photos that were so painfully difficult to be a part of back then but so comforting to have now. She smiled proudly; she said how cute and beautiful her brother was. There was so much love and she asked to see more. I just kept following her lead. She asked me could we light a candle and we did and she smiled; we were honouring his existence together and she beamed with pride also wrapped up in pain. Lily decided we were going to make a promise to light a candle every time we all felt sad in the future. And off she skipped asking for her breakfast, making an aeroplane out of paper and being your normal 4 year old.

I had a choice in that moment today; I chose to be brave and slide into the moment of discomfort and of utter pain.  I could have swiftly changed the subject. Who knew grieving for your son could be so intensified by the grief of your little girl; we strive everyday to be upbeat for her and not talk about our pain around her. We simply follow her lead and she chooses to  brings her brother into daily life and conversation. The words of a compassionate psychologist we had spoken to numerous times during Bobby’s journey rang in my ears; you cannot take away her grief, you need to allow her the space to grieve. I am so grateful for these words as they continue to guide me as I help her deal with his terrible loss.

How I coped during my pregnancy

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March 1st will always be one of our many new dates to remember. It was the day our beautiful son Bobby was diagnosed at his 21 week scan with a birth defect with a survival rate of 50%. 

People throughout the 14 weeks from diagnosis to his death often asked me how was I managing to keep going with determination during a difficult pregnancy. The truth is I believe we all do our very best when faced with very difficult situations. I do have an inner strength and determination much of which I learnt from my parents and I do believe I learnt some great new life skills during my life coaching diploma. I am by no means perfect,  nor do I think I got it all right but this is what helped me through the worst times of our life.

Focus on Love and Hope: The intense love we had for our son and the diminishing hope we had that he would live, kept us going to the day he arrived. It definitely helped us to survive and keep things somewhat normal for our daughter who, until towards the end, did not know her brother was facing a tough time once he landed in this world. We became almost experts in CDH through research and speaking to other parents; something that I learnt from  my own mother who worked as a NICU nurse in our children’s hospital. We never stopped asking questions and there is nothing we wouldn’t have done for Bobby.

Prioritise sleep: Sleep is an essential coping mechanism for me; I pretty much set the clock to go to bed. If I did not sleep well, I could not cope with the emotions I faced on a daily basis; the fear of what was to come and the not knowing if our baby would live or die.

Embrace the support around you: Love and support get you through the most difficult times of your life. If you are supporting someone through loss and any difficult time; surround them with love, its quite simply gold dust. I used my voice with my wonderful family and friends and found myself asking for help and accepted help that was offered.  Sometimes people get things wrong with the very best of intentions but I was honest and relationships remained intact or even strengthened. I am so grateful to my family and friends for all they did for us. Bobby’s journey has also resulted in some new lifelong friends and what a legacy that is.

Consider the amazing help from support groups: Support groups are not for everyone,  however I joined some private CDH Facebook groups where I could interact with parents of surviving CDH babies and also those who did not make it. I learnt what questions to ask and also educated myself on what was ahead no matter what the outcome was. You will be amazed at the wonderful people you meet who are facing the same battle you are on a daily basis and you may just learn something new.

Trust the power of Intuition: I learnt a lot about the power of intuition during my course and it was always something I tapped into in life but I turned it up full force and it did not fail me right up to the point when Bobby came early. My gut told me I was in labour and thankfully I followed my intuition or Bobby’s delivery could have been even more complex. My intuition told me to change consultants at one point; we were not a match and I truly believe it was the right decision.

Know your triggers: Patterns developed around weekly scans at the hospital. Fetal medicine specialists are not going to give you good news unless they are absolutely sure. We learnt to mind ourselves around these Tuesday scans. Wednesdays and Thursdays we hid away a bit to recover from the blows and then planned nice outings with Lily and friends to keep us going to the next blow.

Maintain healthy boundaries: I will openly admit that I was selective about whom I spent time with but I also was assertive if my boundaries were not recognised e.g. I could not handle questions so I was honest with people. I had a private group setup to update my friends as I could not face updating people individually

Strong people stand up for themselves, the strongest people stand up for others:

I now know the importance of having an advocate when you are facing a really difficult time. I am so grateful we had such a wonderful obstetrician in our corner who fought passionately for myself and for Bobby . I cannot emphasise how important this was to us and how greatly it helped us.  I know now if we ever face adverse times again, we will seek out an advocate if we don’t already have one in our corner.

 

What kept me putting one foot forward was a powerful quote I read over Christmas 2015 whilst pregnant with Bobby. The book was “Daring Greatly” by Brene Brown and the quote was ‘Be the adult you want your children to be’.  Brene talks about parenting not being about the discipline methods you use. Her parenting manifesto was simple; you have got to strive to be the adult you want your children to be. I lived by this throughout Bobby’s journey and I am trying my utmost to do it as I grief his terrible loss. I was as strong as I could possibly be when needed; when we were in theatre for his birth surrounded by 20 odd people I knew I could not fall to pieces. I had to be strong for him and breathe through the horrific fear and anxiety. When we were told nothing more could be done and I thought my heart would stop beating with utter devastation, I knew I had to be strong as Bobby died in my arms with my husband’s arms around him. I remember my own mother telling me to be strong for Bobby and to fall apart later and this is what I did.  As we go through the grieving process, this quote is very much at the forefront of my mind. We are trying to be the adult we want Lily to be and what we would have wanted  for Bobby. We are trying to face his terrible loss with strength,yet showing that it is ok to be vulnerable and grieve. There are days we will get it right and days we will not; but we will learn from the tougher days and keep ploughing on to ensure Bobby’s legacy is a powerful and positive one and that we are better because of him. Our son was beautiful, handsome, and courageous; he felt our presence and squeezed our hands. Our moments with him were short and our hearts are broken. Because of Bobby and the journey we had together, future Irish CDH babies may have their survival chances increased. There is now a network built with the CDH experts in Belgium and other future CDH babies who qualify for in utero surgery will not need to battle through the HSE process for funding; the master of each hospital can give approval to proceed. Life is not about waiting for the storm to pass. It’s about learning to dance in the rain. We love you Bobby Aidan Fortune x