New South Wales, November 2011
I have been wanting to tell Ella’s story for so long, But I have never been able to get the words out. As I lay in bed on another sleepless night thinking about the past, I realized Ella is 16 months old already, So I had better get it out now, before she’s old enough to write it herself! So here goes…
I loved being pregnant, I had no morning sickness or aches and pains so I had nothing to complain about. 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. I was also under a lot of stress with my partner at the time, I was hoping things would improve when the baby was born.
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 no 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!? ) and 28 hours in hospital labour I met my little girl for the first time, she didn’t make a noise, just lay on my chest and looked at me. She was perfect. My Ella Jane.
The midwives tried breastfeeding for only a few seconds, so many times I have looked back and wished I had of tried for longer in those first few moments. I so badly wanted to breastfeed!!
She barely made any noise in the first few days, but when she did, every one commented on her little kitty sounding ‘mews’ it was all so cute and funny.
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 devastated! 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 had no idea where my partner was and he had my phone so I couldn’t call anyone, I took Ella back to the room alone and cried. I was holding Ella and I remember thinking, that woman is wrong, you’re perfect. Meanwhile I still hadn’t successfully breasted, she just wouldn’t suck properly. Once again everyone was very reassuring that this was normal, that breastfeeding is hard and has to be learnt.
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 breastfeed! But I had started expressing and trying to giver her a bottle as well.
When Ella was 10 days old the maternal child health nurse came to check her. She weighed her and Ella had lost weight! I didn’t understand, I had spend the week pretty much constantly feeding! I was sent straight to the lactation clinic. I was assured there 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, so she went into the humidity crib. And I sat and just stared at my tiny baby in the 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 allowed to giver her a bottle because the risk that she would breathe 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 cried, screamed and was more upset than she had ever been.
I could still try breastfeeding 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 both 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, so I googled it. And cried again. I stared at my baby for hours, I kept thinking this isn’t right, everything’s meant to be perfect. But reading over the signs and symptoms, deep down I knew she had it.
For genetic tests they had to take blood from a vein, they wouldn’t let me be there for that, made me go for a walk around the block, it was the first time I had been away from her. As I was walking back into the Peadiatrics department I could hear her distinctive cry, she was screaming. I ran in and they had just finished. They had put a drip in in case they needed more blood and a little splint on her arm. I sat up and held her all night. I felt numb.
4 very blurry days later the diagnosis came back positive. She was 3 weeks old. For 2 days I didn’t want to see or speak to anyone. Explaining the syndrome over and over as no one had ever heard of it. I didn’t want visitors. For some reason I felt like a failure. Again I thought, it isn’t supposed to be like this!
They gave me referrals for more ultrasounds on her liver, kidneys, brain, as well as booked her in to see a cardiologist. Everything came back fine. I was so thankful! She had Cri du Chat, but she was healthy. It felt like a small victory among all the bad news.
She was beginning to gain weight with the tube feeding so I would be able to take her home once I was confident enough. I hadn’t left the hospital at all since she was admitted. 3 days after that I felt I wanted to go home.
For the next 2 and a half months I struggled, breastfeeding, then tube feeding, then expressing for the next feed, every 3 hours 24/7. As well as trying to keep up with cleaning, washing and general housework. I was exhausted.
She also used to pull her tube out almost weekly, it was a half hour drive to the hospital emergency room to put it back in. And she almost always did it in the middle of the night! Her cheeks were red and puffy from pulling the tape off so often. I stopped seeing the maternal child health nurse as she had no idea about CDC so every question I had she would palm me off to the pediatrician. And all the pediatrician ever said was, “Oh, just wait and see what happens.”
I felt so alone. I was fighting with Ella’s father a lot, He wasn’t giving the help and support that I needed. Ella and I were alone.
During this time I was also sent to see a geneticist, the closest one was a 2 hour drive away. I was looking forward to it as I thought I would finally get some answers and guidance!
It was the most disheartening experience so far. After a 2 hour drive with a 2 month old baby, the appointment lasted about 15 minutes and consisted of her asking if I’d googled cri du chat, and telling me that chances are Ella won’t walk talk or live independently ever. I drove the whole way home with tears running down my face. All I was capable of thinking was why… why… why…
This was probably the hardest time in my life. I felt like no one would ever be able to answer the million questions I had about Ella and her future. My milk started drying up due to stress and over tiredness. The pediatrician said she was now strong enough to take a bottle and I heartbreakingly made the decision to switch to formula. Still nasal gastric feeding but bottle first. She started doing really well, gaining weight and drinking more of her bottle and less down the tube. As soon as she started on formula constipation became a massive issue. Nothing helped, so she needed a suppository every second day. Even now she continues to have problems with constipation. Finally when Ella was 3 months old the Pediatrician said if she put on 100 grams at her next weekly weigh in the nasal gastric tube could come out and she did! It was the happiest I’d been since she was diagnosed.
At the time I was also asking the pediatrician about early intervention and help for Ella. He kept saying just wait and see. It didn’t seem right to me so I started looking into it myself. Things with Ella’s father got worse. I didn’t want Ella growing up around that so In December I moved into my mum’s garage.
It took 3 months of calling different doctors and therapy places, getting referrals and letters from different GPs and pediatricians. I even saw one pediatrician who spent the whole appointment asking me questions about CDC, he’d never heard of it. I felt like I was getting nowhere. During this time I had been approved to rent a nice little flat for Ella and I. A couple of weeks before we were to move I finally found somewhere that was willing to help! Things were starting to look up finally!
By this stage Ella was 6 months old and already a little behind.
We moved and Ella started physiotherapy, occupational therapy and speech pathology, also got into a playgroup for special kids for her and thus started the life I’ve now settled into.
Its been 10 months since then and Ella and I are settled into the routine of our lives. She still wakes up several times a night for bottles, I have tried so many different things to get her to sleep through, but it is getting less and less so I figure she’ll grow out of it. She loves her food, Will eat anything as long as its not lumpy lol finger food she will just throw away and she has started drinking water out of a sippy cup, and can now drink through a straw.
I started sign language with her, not much result yet though.
It’s extremely tough at times. keeping up with appointments and therapies, doing the exercises they recommend with her. The lack of social life or time to myself. Losing many friends that don’t know what to say, or how to act, still having to explain over and over what CDC is and what it means for her. The feeling of loneliness. The constant worry about Ella and her future.
But then when Ella giggled for the first time, when she first grasped a toy (5months) when she started to crawl (10 months) when she sat up unassisted (15 months) and pulled herself up to kneeling (15 months) my heart fills with so much pride and joy, all that just melts away and it’s all worth the effort 🙂
Ella is a very cheeky girl now, she loves music and as soon as she hears it she bounces 🙂 she loves when her uncle Lukey who plays guitar and harmonica for her.
She loves it when I lay on the floor and play chasy with her and absolutely cracks up laughing when I blow raspberries on her belly. Ella loves playing the piano and loves splashing and kicking in the bath and pool.
Ella also loves kicking the walls and the sides of her cot, the louder the better!
She blows raspberries and kisses, gives high fives and claps her hands. She also fake sneezes and fake smiles for attention which is hilarious. She’ll blow you kisses when you have something she wants 🙂 haha
She’s into everything, she can now open draws and cupboards!
She is so determined too. When she sees something that she wants she gets an intense look of concentration and goes for it. Ella has so much personality just bursting out 🙂
I still have my down days, days where I wonder what could have been, mostly days that I’m lonely or extra tired. This isn’t the life I had planned or the life I wanted. But every day Ella makes me smile and I’m prouder than I ever thought possible. And I have met so many wonderful and inspirational people on this journey.
I know with Ella’s determination she will achieve so much more than everyone first expected of her.
UPDATED: July 2014
Today is a day for reflection.
3 years ago my tiny 3 week old baby was diagnosed with Cri Du Chat.
I felt my world come crashing down, my perfect baby was taken away from me and replaced with something… different. I grieved for a child that never existed. For the little girl I had envisioned while I was pregnant. I felt like I would never smile again and be trapped in darkness forever.
I never imagined 3 years later I’d be living in brightness, Ella makes me smile and laugh every day, she is my sunshine. The dreams that were taken away have been replaced by something truly wonderful. The journey is not always easy, but the destination is amazing…