Thursday 26 April 2018

'I found it challenging to have conversations with people who overlooked what had happened' - Mum who tragically lost her baby son Bobby

Emma Keogh on returning to work after the loss of her son Bobby

Emma Keogh pictured with her family
Emma Keogh pictured with her family

Beautiful Bobby Fortune was a much wanted second child.

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. During 2014 and 2015 there were heartbeats there, gone and we grieved for them.

To prevent further pregnancy loss, we went through IVF with implantation screening; a very tough experience but we were prepared to do it for Lily and for us. We really did cross so many T’s and dot so many I’s, so the shock of hearing there was something wrong with our baby boy on March 1st 2016 was breathtakingly enormous.

Bobby was diagnosed at his 21-week scan with a serious birth defect with a 50pc survival rate called CDH. Congenital Diaphragmatic hernia 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, an opening allows abdominal organs into the chest cavity and this inhibits lung growth.

Emma and her husband pictured with their son Bobby.
Emma and her husband pictured with their son Bobby.

The utter shock and devastation we felt at this scan is still hard to articulate. I remember how I was feeling around that time of my life. Life was pretty good with my then four-year-old and my amazing husband. We had plans, we were so excited to be this far along in our pregnancy with Bobby; we really did feel on top of the world.

And in an instant we were on a new journey that can only be described as a rollercoaster ride you never want to be on. Following Bobby’s diagnosis, we went on a 14-week rollercoaster with him during which time he showed everyone his fighting spirit and made us so incredibly proud and full of love. There were times we thought we might lose him and even moved our lives to Belgium for in utero surgery which sadly was not meant to be.

Each week we would hope for some better news. Bobby’s prognosis started off as 50/50 but quickly depleted due to further complications which impacted his lung development.  Unfortunately, Bobby came early at 34 weeks 2 days and passed away 7 hours later. Sadly, his lungs did not match his incredible spirit.

It has been 10 months since we met and lost Bobby. We are devastated and finding our way on our grief journey. Bobby gives me strength every day to get up and put my best foot forward. Bobby had red hair, just like his sister. I can only imagine how strong a force he would have been, just like Lily. I suspect they would have loved each other dearly, fought like only siblings do and given us so many laughs like Lily does every day. Lily tells everyone about Bobby regularly writes his name on little notes around our home and believes we are family of four - five if you include her beloved cat Whiskers.

I’m back at work for two months now. The weeks leading up to it were pretty woeful but being back has been uplifting and created space for some joy again. The anticipatory anxiety in the weeks before was intense; I felt vulnerable, lacked total confidence and had lost trust in myself. I walked through those doors feeling like an utter failure because I couldn’t do anything to save my son.

What I wasn’t prepared for was the amount of people who were in my corner, willing to feel the discomfort that is child loss and not sweep it under the carpet and hurry me along. I could stand on a stage and talk about advocacy and people being in your corner for hours. I know how special it feels and how hard it can be when it is missing.

Emma Keogh with her daughter Lily
Emma Keogh with her daughter Lily

I went to our leader in my company back in November to let her know I wanted to come back. I’ve become somewhat protective of the telling of my story.  I wanted her to hear from me personally how I was and that although our lives had been turned upside down, I would be ok. I just needed some help.  Asking for help is enormous when you are a shell of your former self and looking back I feel proud that I did it. It was really difficult to do at the time. I backed out a number of times, but thought about the little girl at home looking at her role model and that gave me the little kick I needed.

When you no longer trust yourself or your body, it’s really hard to believe in yourself. Having spoken to my doctor and bereavement counsellor, a phased return was recommended and a short-term part-time role was created for me. A dear colleague and friend managed my return to work. I’m incredibly proud to work for a company where we take care of people in the good times and bad.

I’ve been a people leader for many years so I know a lot of people. The prospect of seeing them was overwhelming. I asked that a communication be sent to let people know what had happened and that I was coming back. And if people didn’t know what to do, acknowledging Bobby and his loss was something I welcomed. This was probably the most difficult thing to ask given the amount of people who would receive it. My already vulnerable self was feeling more naked than ever.

I knew in my heart this would help but I judged myself, wondered about the judgement of others but fired ahead my head exploding with over thinking. Many people came to me afterwards, some to say they didn’t know and were so thankful for the email and some to say they were so glad to know my preference. I met my new boss shortly before day one as I was starting a new role when I got back. I wasn’t prepared for her genuine desire to better understand our tragedy and how I was coping. I explained how walking through those doors day one was going to be incredibly overwhelming so we made a plan for day one; she walked with me through the doors that first day.

Day one was exhausting. I felt shook and incredibly sad to be back with no baby to tell everyone about. People warmly welcomed me back, it was so very healing. Some felt comfortable enough to give me a hug and tell me how sorry they were and this meant an awful lot. Some were awkward and didn’t know what to do and I accepted this. People say all the time that people don’t know what to do in these situations. I think we need to always remember how harder it is for the person going through it.

The things I struggled with were the questions blurted out in pure discomfort to fill silences. Questions about how my maternity leave was and if it went quickly. They were in no means meant badly, people were just very uncomfortable. I will admit I found it challenging to have conversations with people who overlooked what had happened. I mostly cut to the chase and people almost sighed a breath of relief when I normalised the conversation. Nothing really prepares you for any of this no matter how hard you try to mentally prepare.

For the first week or two I couldn’t understand emails, reports and presentations - they were like double Dutch. I definitely gained a few more eye lines squinting trying to make sense of things. Thankfully this slowly improved and I found myself even talking and working faster over time.

At times I have to dig deep to care about things that seem so small now and I work hard to focus on the energy I get from the things I love doing at work. Seeing lots of people again every day has been fantastic, particularly for someone who loves being around people. It makes you realise how alienating and lonely grief is. We have had a few milestones to get through since I came back and these have been grim days. These are the days you feel like you have been hit by a truck all over again and it's overwhelming.

I have been upfront about these and this relieves the burden of trying to pretend all is ok when it just isn’t. I worked at home for one of them and took leave after a very emotional evening when Féileacáin presented us with a cuddle cot in memory of Bobby from funds raised by a dear friend.

Sadly, there are so many more firsts to come. I hibernated for most of Mother’s day and I’m absolutely dreading the build-up to Bobby’s first birthday. Lily’s birthday was so much fun and we made it the very best it could be for her but we deeply felt Bobby’s absence

Being back at work has handed me back some of my identity. Having a focus every day helps enormously when you are grieving a child that never came home. It gives you a new lease of life and a break from the exhaustion that is grief. You feel like you have been plucked by a digger from a parallel universe into the real world again. We’ve got some really nice holidays planned with Lily and we are so excited at the prospect of them. I appreciate things more than ever. I cannot describe how wonderful it is to be excited about something again. You do not think this could ever be possible in the early days. Who knows what the future holds right now, this path is certainly not one we chose but I’ve climbed another mountain and come out the other side alive.

 

* INM has a dedicated section independent.ie/babyloss where parents of all ages can share their stories of miscarriage, stillbirth and neonatal death. The section will serve as a testament to the women and men who share their stories, a memorial for the babies lost and as a resource for other people who have gone through or are going through the experience.

Your stories can be anonymous or on the record and nothing will be published in any format without prior consultation with you. If you would like to be part of this and tell your story, email Yvonne Hogan at yhogan@independent.ie

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