This is how I told my story at Heart Children Ireland’s National AGM…
“Hi my name is Olive, and I am a mum of three girls; Micaela Nicole and Mackensie. I was going to tell my story spontaneously , but every time I practised doing it this way, my emotions took over and I forgot where I was, so today I am going to read it out to make sure I don’t skip over anything.
We, as a family, come up to Dublin quite often as each of my girls see different specialists in Crumlin, including their cardiologist, Dr Coleman. Thankfully they’re all doing great at the moment but it wasn’t always that way. About a year and a half after my youngest girl, Mackensie was diagnosed with her congenital heart defect, I was diagnosed with Post Traumatic Stress Disorder.
Now I know you’re just in the door and probably wondering why are we starting with such a sensitive topic but we felt it would be good to do it now just in case any issues arose and people could chat to each other or ourselves about it at lunch time. Deirdre, our psychologist is thankfully here today also and is happy to talk to anyone that wishes to do so.
I myself am here today in the hope that my story can help others. I wish that another parent had told me back then that we all react differently to our situations, that it was okay to feel the feelings I was having , that I wasn’t alone and that that there was loads of help available out there for when I was ready, not just to talk, but to even admit something wasn’t right.
So here we go: before Mackensie was ever born I was worried that things might not be okay. I couldn’t say what exactly was wrong but my gut was telling me to stay alert. Anyway the labour was difficult, it took what seemed like a lifetime for her to cry and she wasn’t as pink as my other girls had been when they were born. I was worried but was told over and over again she was fine and that I probably just had the blues. So we went home but my anxiety rose as she couldn’t take her bottles for a very long time at a go, was sleeping nine hours at a time and wasn’t gaining weight. I brought her to A&E three times before she was twelve days old but both they and our health nurse at home said that it was me -that I just over-anxious, had possibly got post-natal depression and even that I was molly-coddling her. But something inside me told me something wasn’t right and so I fought my corner on the last go and eventually got her admitted. The next morning we were told that she had a slight heart murmur but they still sent her home to await an echo for six weeks’ time. Straight after being discharged I brought her to my GP (who was back from his holidays) and he knew something was seriously wrong. So he picked up the phone and sent her straight to another hospital which was where we were told she had three holes in her little heart and that she would need to have heart surgery in Crumlin.
In a state of shock and panic, when we got the call up the next day, I ignored my gut instinct and instead took advice not to upset my other two daughters by saying goodbye to them. And so we just left, just like that. The poor little things, trying to adjust first to a new baby and then mammy, daddy and baby just disappearing. When we got up there I felt so bad for them and I wanted to ring them all the time but I was afraid I was going to upset them. I missed them so much but couldn’t say it out loud because I knew I had to stay strong.
So in this tiny cubicle on St. Theresa’s ward we stayed; staying strong and hoping, praying and wishing without realising how long we would eventually be staying for. I had to stay strong before her surgery, during her surgery and after her surgery. The two things that stick out clearly in my mind were getting Mackensie baptised in this little cubicle before her surgery and having to learn how to do baby CPR on her before we got home.
It didn’t take long to meet other parents in the parents room, and it was surreal how we all learned the lingo quickly and were able to talk like doctors and nurses: conversations would go anywhere from discussing surgeries, types of heart valves to tube feeding and medications. But on the inside we were all feeling different emotions at different times; we were so tired, we were scared, we were frustrated and even sometimes guilt ridden – was it our faults our babies were sick, how are the other kids at home, how will we manage financially, why did this happen to us, why amn’t I worrying like all the other parents are? Our worst days were if a baby had lost their battle. No-one wanted to look at each other in the eye, because the fears and pain were too raw. And we had of course, to stay strong.
The day before Mackensie’s surgery, a great friend of mine now, that I got to know because her little baby girl was there, decided with my husband not to tell me about a little baby that had died that day, as she knew it would terrify me.
And she was right, it would have.
We eventually got home after a long six weeks stay and I soon realised very quickly that my safe haven of Crumlin was gone. I remember panicking on the first night because I wasn’t sure if the nib in the syringe actually counted as a milliletre of Frusomide or not! I worried about who would be able to mind Mackensie if I got sick. I had lost trust in so many people because of the so many battles I had initially to get her diagnosed and because my husband and other family members believed the doctors too at that time and not me, I had lost trust in anyone else to mind her or my other girls too. I was so scared being so far away from the security that if anything went wrong we didn’t have specialists to hand.
I soon learned a few months later though in one of the fastest journeys of my life those ambulances can get there fairly rapid if they need to!
But I also realised I didn’t have the security of the parents in Crumlin to talk to. I remember one day when we had to be moved to another ward temporarily it had made me so upset that the kind nurse moved me back. I was so lonely and missed everyone so much that I needed the security of St Theresa’s to keep me sane. Back home I knew that people were trying to be positive by saying that “she didn’t look sick at all” or that “sure she’d be grand”, but I used to feel like screaming at them because I had so many fears for her future.
And then my lovely friend that had protected me from my pain, before Mackensie’s surgery, rang me to tell me about her pain.
Her beautiful baby girl had died.
Words cannot describe the hurt, pain and utter heartbreak. My friends had lost their only baby during heart surgery. It was just so, so sad. And frightening.
So you would have thought after that a few months later, when we were told Mackensie wouldn’t need her next open heart surgery that I would have been so relieved and happy.
The silent fears suddenly came to a head. I went home, I closed all the blinds in the house, turned off the phone and for three days solid, I cried.
I had no idea what was happening to me and I felt so, so guilty. Why was I crying? Did I want my baby to be sick? What was wrong with me? I couldn’t talk about it to anyone because I felt like such a bad mother and my anxiety started getting worse until soon I couldn’t tell the difference between my gut instinct and worries. I didn’t want anybody to mind the girls and I started staying in, even quitting my job in the midst of it all. It all came to a head one day when I couldn’t get my husband on the phone and I had convinced myself he had been in an accident. One of my closest friends, Linda, came in to the house to calm me down and it was that day that I knew, I needed help. Because of my anxiety issues around the girl’s safety and that I may not hear them at night I refused anti-depressants or sleepers, which probably would have been a great help, so instead, I sought out counselling.
The first day was the hardest; my counsellor was sitting talking to me and I suddenly heard an ambulance in the distance. I made a bolt and just jumped out of my seat and ran out the door. He ran after me not knowing what was wrong and I explained that I felt something was wrong at home – he reasoned there and then that I would be quicker on the phone if I rang, and I did. Of course my poor husband, Fintan, asked why was I not in counselling and I told him about my fears. So for the first six months of counselling, I sat with my phone turned on, the door left ajar and the promise that Fintan would ring me if anything was wrong.
So, for the next two years, every Monday night, I met my counsellor.
And it saved me. It saved my family. It saved my marriage.
I will never be the person I was before Mackensie was diagnosed but to be honest I wouldn’t want to be. I still do get the odd twinge of anxiety every now and then, but I now have the tools to cope with it and so much more now. And I know blaming hospitals or anything else for that matter does not help…it only builds up the anger inside. Being proactive and making wrongs right does help though and it is this reason why I am sharing my story with you.
Recognising you may not be okay is the first step. For me it was the anxiety, anger and guilt but for others it may be the complete opposite. Talking is the next step. Talk to a friend, family member, GP…you may be surprised that they already know that you are in a bad place. Next get help – figure out which is the best way for you to get treatment by talking to your GP or psychologists like Deirdre. Know that the reason you are feeling this way is because you are trying to stay strong in a really stressful situation and sometimes when the calm after the storm comes, the real storm is only starting for you. My counsellor always told me not to be too hard on myself and I’m here today to say the same to you guys – Go easy on yourselves, know it’s ok to feel the way you’re feeling and talk to one another.
Thanks so much,