Congenital Diaphragmatic Hernia: My CDH baby. CDH Awareness Day 19th April

Five years ago, on April 27th, our first child was born.

Perfection in every detail, I truly believed I had the most beautiful baby ever seen. I believed every nurse that told us that she was such a pretty baby- which she clearly was- and is. I had survived child birth- one of my great fears. In fact, I had smashed it. Gigi was seven pounds twelve ounces. The perfect little snapper.

Three days in hospital and we were discharged to go home with our beautiful daughter. Flowers in the hall, the quintessential Moses basket in the front room, and a host of delighted family members confirmed it. We had achieved it. We had a baby.

Feeds and sleeps were established. I felt OK. We were doing it.

Then that frightening night came.

We were seven days at home. Happily at home. Not worried. It was Saturday afternoon. My in laws were over and had brought dinner. We had eaten, my husband went farming. Baby and I were alone. She started to cry.

Her cousin, aunt and uncle arrived. My baby was inconsolable. They smiled quietly (the parents of a colic baby) and left me to it, knowing I needed space. This it it, I thought. This is the famous colic.

I cuddled her, walked her, sang. I eventually rang my husband who bounded back to me across the fields. We tried feeding, winding, attempted massages for constipation, took temperatures and googled the pants out of this. Colic, reflux, colic. Colic. It had to be.

That night she stopped taking her bottle. She added a high pitched whine to her sleep. We were then in A and E, me with a soiled nappy in a Ziploc bag because I didn’t know what else to do or bring.

My husband panicked. I told him what I thought. It is this colic thing. It has to be.

She was checked over. Everyone was calm. Harassed parents in A and E are regular occurrences. That was until one doctor observed an unusual chest movement. A chest scan. A private room and a conversation.

I had never heard of CDH. I was clutching her to me. Totally calm. Not crying. Either of us.

My husband was on the phone. People were moving all about us. Gigi and I sat still. Nurses packed, checked, cross-checked lists. I was given a roast beef dinner. Plans were made. Gigi was in a type of incubator. We were on the way to Crumlin children’s hospital in an ambulance. A nurse called Geraldine travelled with us. Her eyes never left my child. Her face never left my mind.

Chronic Diaphragmatic Hernia is when a hole occurs in the diaphragm. Stomach organs had started to travel through the hole and into the chest cavity which would cause obstructions to lung growth. It has horrible side effects. It is often fatal.

They told me not to Google. I didn’t. For a long time, I did not Google. But others did. I knew every time I got a text message, saw their facial expressions afterwards when they met me for the first time after the event, I knew they had read the stories. Eventually, I did too.

We have a miracle. A child born with CDH, diagnosed outside the womb and with no side effects.

We have had researchers study her. One even came to our home. They again reaffirmed our miracle. Our luck. She might never be an athlete they said but that was it. She did not have heart problems, lung problems. Her brain was not affected by lack of oxygen. We were told again and again. She is fixed.

I always thought that was a strange phrase. Never try to fix people, we are told. Yet here we are. With our fixed child and we thank god daily for that. She is on my lap right now. Watching Sing. Loving life.

She was operated on within twenty four hours that day. ICU. Hospital wards. We had to teach her to eat again. I looked at the bandages covering where they had operated on that perfect skin. Now a scar grows with her reminding us of what happened.

I was very angry at times. Very quiet. Anxious. Panicked. We are not unaffected. Yet we are through it, aware of our fortune. Aware to the point of fear. An all consuming fear that if I talked about it too much, wrote about it- I was playing with fire. I blog because I was once very low. I was low because I once came face to face with our worse nightmare, saw it, walked away from it. I once feared child birth. There are worse fears.

Two weeks ago I went to a cookery demonstration. Young, pleasant and very talented Adrian Martin took to the stage for an entirely female audience. One audience member was Geraldine the nurse. As everyone tasted lemon thyme bread and passion fruit souffle, I shed a tear and hugged a lady who remembered our story. Earlier that day, I had discovered CDH Awareness Day would be April 19th. My birthday. I wouldn’t forget. I joined Facebook groups hoping I could help someone that might have questions. It was too hard before.

Congenital Diaphragmatic Hernia Awareness Day is April 19th. So we know we are dealing with.

30 thoughts on “Congenital Diaphragmatic Hernia: My CDH baby. CDH Awareness Day 19th April

  1. Oh wow, she is a little miracle and thank god you took her to a and e. I think back to when Joshua was a baby, one night he was crying as I fell asleep and still crying when I woke hours later. I still feel guilty that he might have cried all night. I have never heard of CDH.. maybe if I had read this 8 years ago I wouldn’t have slept that night, thankfully he is fine but wow, Gigi is lucky to have you. X x

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  2. I’m so glad your story has a happy ending, Orla. What a blessing! I remember several scary moments when my son was young, you can feel so helpless. I imagine every moment as a family now seems that more special.

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  3. I work in a pediatric hospital and have seen first hand miracles. One is parent to parent. Parents showing and telling other parents their stories and those parents seeing those kids. Yes doctors and nurses are critical but I think parents hearing first hand stories from other parents is also critical. Thank you.

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    1. Roast beef is associated with Sunday for me always do even though I didn’t have some for quite some time after that it was ruined for a good while. Instincts are everything really aren’t they? Why should we ever doubt them? 🙄

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  4. Oh shit! It is 7.46 I am scrolling through some of my fave bloggers to find a read to accompany me through my bowl of oats nuts and seeds. As I drizzle the milk I press read. A seven minute read, one that never allowed my spoon to touch my lips, or my mouth to be wet enough to swallow if I had. I expelled air through my nostrils with force, to catch the salty fluid that washed my face, the back of my nose and throat. My silent tears were for your pain, for your infants soft whine, and a virtual hug for a nurse I will never meet.
    So, on that note … you ruined my breakfast, who the flip wants salt water and milk on their oats? Made me emote and left me a quivering wreck all before 8 in the morning. The trouble with virtual friends is you can’t hug them, or let them see what their words mean when read. Our George, born on st Patricks day this year, came clearly into view as I read your Gigi’s story / your nightmare; I pray to all that is holy that George or my daughter slide comfortably passed the horrors that hovered at your door.

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    1. Oh Ellen I am so sorry to have evoked that- I toned down my real feelings by 1000 so now I am glad. It took a long time to want to write it and I don’t think I would have only for the awareness day that needs the stories. I wish I could buy you breakfast to make up for your ruined one xx and I felt that hug in every single one of these heartfelt words even if it was virtual. I also pray that your daughter and the lovely George are always safe and happy as Gigi is now. That nightmare for us is over and I shake typing every word of that last sentence out of fear that will never leave xx

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