Some time ago, I put the call out into cyber space, for any parents of children with special needs to share their stories.
It wasn’t only limited to Cystic Fibrosis or Global Development Delay. Anyone who wanted to share their experiences as a way to vent, or hopefully help someone in a similar situation, were (and still are) invited to tell their stories.
The wonderful Carly Mara accepted the challenge 🙂
Her daughter, Ava, not only has CF, but was also born with a cleft lip, and was also dealing with hip dysplasia. While all this was going on, Carly’s father had a stroke.
Her story has touched me. I can relate to so much of it (well, the CF side of it anyway!) I found myself nodding along as she describes her emotions. She has explained them so much better than I could!
Thank you so much, Carly, for sharing your family’s experience (and providing pics)
Follow her story. We will be publishing it in installments.
Here is part one of Carly’s story….
Meet baby Ava. Isn't she adorable???
The 14th September 2010 was just like any other day.
We had a 3 week old baby girl who was born with a Cleft Lip and was also in a froggy brace for Hip dysplasia. Her cleft was discovered at my 20-week anatomy scan(another day I will never forget!)
I was devastated. I just couldn’t believe this had happened to our baby girl’s face! It was hard enough getting her here to begin with, being that she is our IVF miracle I was sure that was the biggest hurdle we were going to have to overcome! So once I got those two little lines, and the confirmed blood test, I thought “WOW. We did it!”
Little did I know there were three things waiting for us around the corner, the biggest blow coming to us last.
I remember the midwife coming to check on Ava. and also to do the Guthrie Test. It’s funny. you know, cos when I think back, the midwife handed me a pamphlet explaining the Guthrie Test, how it was done and what it screened. I had a really quick look at it and placed it on the table. My mother-in-law said “Have you read through it?” I said “Yeah” quickly, then the midwife said I should sit down and have a read.
Once again, I just flicked through it thinking to myself “Nah it’s all good. We’ve got the cleft lip and the brace (which was fitted at three days old)…there couldn’t possibly be anything else.” So the whole thing just left my head. Test was done, Ava was looking well and doing everything a newborn should be doing so all was great. I never gave that Guthrie test another thought.
We knew Ava’s Cleft would be repaired at 3-months-old, so we were concentrating mostly on that, trying to prepare ourselves mentally and emotionally. So the morning of the 14th September, I was sitting on my bed, Ava was asleep and my hubby was out in the kitchen. The phone rang, he answered it. I could hear him talking for a while but couldn’t hear what was being said. Didnt really think much of it. Then he hung up walked in and said to me ” That was a lady from Princess Margaret Hospital. She said Ava has tested positive for Cystic Fibrosis”
I just looked up at him and said “What?”
Ava in her brace for hip dysplasia
I was dumbfounded! Mostly cos I wasnt too familair with CF. I knew it existed along with a million other diseases. I knew it wasnt a nice one, cos I remember a conversation with my mum years ago talking about her nursing years. She said that from things she saw she never wanted to have a baby with four particular diseases, one of which was CF.
I asked hubby to tell me the whole conversation, so he repeated what he just told me. I demanded more information, but I think he was stuck too, not knowing exactly what had just happened. But luckily he wrote down a phone number, so I called and got Liz on the phone. She explained that the Guthrie test had come back positive for Cystic Fibrosis. She gave me a rough run down of what it was. I just kept asking her if they were sure, like, really, really sure. Is it possible they’ve made a mistake? Are there any other tests Ava has to do to further confirm it?
Liz told me about the Sweat Test. I think I was on the phone to her for about twenty minutes, going around in circles pretty much, trying to comprehend what was being said, and at the same time flat-out rejecting it. I wanted to scream and cry. I also felt totally numb and angry and confused.
I think about a week or two later we had to go to PMH for CF Education, woah! What a head spin that was! So many people, soo much information. All so scary, confusing and overwhelming. I think it was even harder for me at the time, because the same day as Ava’s diagnosis, my dad had his second stroke, so we were between Sir Charles Gardiner Hospital & PMH for quite some time.
Thank God we were given so much literature, cos there is no way in hell I could have retained much information. Everyone time someone walked into our little room to talk to us about their part in CF treatment, I felt defensive and a little stand-offish, like it was their fault we were there. I felt some kind of resentment towards Liz for calling us that day too. Every time we would get a phone call or appointment letter I would feel angry because I just wanted us to be left alone. I had waited sooo long to finally have my little baby, and I was having to share her with all these people.
Being shown all the physio positions and all the medication Ava would be on was very overwhelming. Where physio was concerned, for a few months, it wasnt at the top our priority list because Ava had to be in the froggy brace for 23 hours a day (it could only come off at bath time). Our physio understood, so that was one less thing taking up space in my head.
Our first lung function test was a whole lot of drama for nothing. Very stressful the first time around. The sedative didnt do its job. Ava was screaming and crying, which was upsetting me. I hated seeing her have to go through all this stuff. At one point, hubby was holding Ava in one arm and vacuuming the main desk in Respiratory Department, trying to get Ava to sleep (she was a white noise baby for quite a few months. I spent many hours with the blow dryer going or the vacuum putting her to sleep, even at 3am!) But unfortunately this day at PMH it just didn’t work. So after an hour or so, we decided it was time to go home, thank God! Once home, Ava slept soundly -of course!
Our first Bronchoscopy was an experience too!
Fasting a baby is horrible. Being in the waiting room with other parents and their children, waiting to be called in, while your walking the floors with a screaming baby is no fun at all! Plus being a bag of nerves knowing what is going to happen, your mind going over what they might find in those little lungs, it was really starting to do my head in! Then finally we were called in. The walk down the corridor felt so long, cuddling Ava soo tight and giving her the biggest kisses as I hand her to my husband, Chris, so he could be with her when she goes to sleep.
I just felt sooo helpless and guilty, and wishing I could take it all away from her, or that I could go through it all for her. We waited in the Friendship Room. I finally sucked my tears up and it was all over. Into recovery and there she was, my tiny baby, sound asleep. So the tears started again. The results from the bronchoscopy came back fine.Yipeeee!
One bronc down, Cleft lip repair to go!
To be CONTINUED……Keep an eye out!!!
The nurse mentioned in this installment, Liz, will be known by West Australian CF families. To those who don’t know her, she is a clinic nurse on the Princess Margaret Hospital CF team. She is the “guru” CF nurse.
The” Friendship Room” mentioned, will also be known to families who have been at PMH. It is a waiting area for parents to sit in while their children are in surgery. It is run by hospital volunteers who serve tea/coffee, provide plenty of magazines and conversation. They receive the call when your child is out of theatre, and escort you down the passages to where your child is in Recovery.