Less than a month after Ella was born, she was diagnosed with cri du chat, a syndrome I could barely pronounce, let alone ever heard of. The day my life changed – this is our story
Everything changed when Ella was diagnosed. I guess you could say my life started, because looking back, I barely recognize the girl I was before. It’s like after the diagnosis I split into a whole other person, the one before me left in the dust.
The old me was impulsive, naive. I quit jobs on a whim and moved more times than I care to remember. I made life changing decisions and never really planned ahead or thought about the future. I bought brand new cars on finance without so much as a day to think about it – twice! Even when I fell pregnant I didn’t realize the gravity of the situation.
I was actually really good at pregnancy, I wasn’t to uncomfortable, I didn’t get sick or swollen or cranky. At my 12 week ultrasound they noticed there was a single umbilical artery, so was sent for more scans at 18 and 25 weeks. Every time I was told there was nothing to worry about, everything else is fine.
I googled single umbilical artery and was very worried about what I found. I banned myself from researching any more. Burying my head in the sand seemed like a much better option! It had always worked for me.
At my 18 week scan he said Single umbilical artery is “not very common, but not unusual” and still to this day that sentence makes zero sense to me. Little did I know the words “not common” would become something I would hear so often.
9/7/2011 at 12:30pm Ella was finally here! After 3 days of early labour, being sent home from hospital twice being told to wait til the contractions are severe (all I could think – wait they’re gunna get worse than this!?) and 28 hours in hospital labour I met my little girl for the first time, she didn’t make a noise, just lied on my chest and looked at me. She was perfect. My Ella.
She barely made any noise in the first few days, but when she did, every one commented on her little kitty sounding ‘meows’ it was all so cute and funny. Joking that I’d spent to much time with the cats when I was pregnant! Funny jokes!
Even then I was still that other person. That other Melanie that had never really known hardships, the girl that just winged it. The girl that had never known grief.
48 hours after her birth she went for her first set of tests. I went in with her and the pediatrician noticed quite a few Things. Prominent brow, ‘simple ears’, ear tag, folds in her eyes, wide nose bridge, that she held onto her thumbs, her reflexes, the single umbilical artery, she even wrote down about her ‘unusual cry’ I was getting more and more frustrated! I just wanted to pick Ella up and tell the Pediatrician to stop picking on her! She assured me that there was nothing to worry about, but was referring Ella to get brain and liver ultrasounds, just to be sure.
I took Ella back to the room alone and cried. I was holding Ella and I remember thinking, she’s wrong, you’re perfect. Meanwhile I still hadn’t successfully breastfed, she just wouldn’t suck properly. Once again everyone was very reassuring that this was normal, that breast feeding is hard and has to be learnt.
I was assured I was doing everything right.
The next day she had all her ultrasounds, and everything came back fine so I was sent home with Ella that night.
The next week was horrible. All Ella did was cry. I was constantly feeding her, tried every different holding position and nipple shield. I was still so determined to breast feed! But I had started expressing and trying to giver her a bottle as well, and even that wasn’t going well.
When Ella was 10 days old the maternal child health nurse came to check her. She weighed her and Ella had lost a lot of weight! I didn’t understand, I had spend the week constantly feeding! I was sent straight to the lactation clinic. I was assured that I was doing everything right, but to express and give a bottle after every feed, and in 3 days if she hadn’t put on any more weight she would have to go back into hospital.
For 3 days I fed, I expressed, I bottle fed, I cuddled and loved my baby, mentally willing her to put on weight, for there to be nothing wrong.
She lost weight.
Admitted into hospital immediately, they took Ella’s temperature and discovered she couldn’t keep her own body temp, after trying skin to skin with no results, she went into the humidity crib. And I sat and just stared at my tiny baby in this glass cube. I felt like a horrible mother, like I had been starving my baby.
That night (and every night until she was discharged) I slept on the couch in her room. The next day the pediatrician saw her again, her suck isn’t strong enough. I was no longer aloud to give her a bottle because the risk that she would breath it in and aspirate was too high. She would have to have a nasal gastric tube for feeding, they suggested I leave the room while they put it in, but I wouldn’t leave her side. It was horrible, one nurse held her arms, while another held her head, the third pushed the tube up her nose and into her stomach. she screamed and cried and was more upset than she had ever been. Her nose bled a little. I felt helpless for the first time in my life.
I could still try breast feeding then top her up with expressed milk through the tube, every 2 hours. They Took blood samples and sent away for more tests. She had so many tests over the next couple of days, she had several little needle pricks in her tiny hands and feet.
On day 4 in hospital the told me they wanted to test for cri du chat as well as some other genetic disorders. Of course I had never heard of that. They gave me a medical book that looked about 30 years old, immediately there were words that were all I could focus on. Mental retardation – severe physical delays -life expectancy 38 – health issues – won’t crawl – won’t walk – limited eye contact – won’t talk. Each word seemingly jumping off the page and punching me in the gut.
I cried again. I stared at my baby for hours, I kept thinking this isn’t right, what did I do wrong? everything’s meant to be perfect. But looking at her characteristics, and listening to her cry, deep down…
I knew she had it, and that my world was about to change.
To be continued another day – and I promise, things do look up!