Laura’s Story

December 3, 2016

It was hot July and I was impatiently awaiting the birth of our daughter. I was 10 days overdue and getting more impatient by the hour! I was due to be induced in the morning and had a feeling of scared excitement; I just couldn’t wait to meet her! The next morning came and everything went to plan, I was induced at 9am and by 11am I was in early labour, a lot quicker than I was expecting!

Labour started progressing but then things got slightly more dramatic. To cut a long story short Macy Rose was born by an emergency c-section the following morning at 2.37am, weighing a super 8 pounds and 15 ounces. I remember the moment she was born as an overwhelming feeling of joy after such a scary labour. She was perfect. I couldn’t take my eyes off her.

I wanted to breastfeed and the midwife was keen to help get this started. She placed my daughter on my chest and explained what to do, I awkwardly cradled my first child and we had a go. That’s when I heard the clicking sound for the first time. “She’s not latching on properly” explained the midwife “thats why shes making that noise”. She could clearly see my distress so she advised we both get some rest and try again in the light of day.

The next day came, and another midwife came over to check how we are getting on. “She keeps making a noise”, I said to the midwife, “She’s not latching on properly” I heard once more. At this point I started to doubt my ability to be able to breastfeed, feeling like a complete failure I carried on trying, trying my hardest to keep the tears from rolling.

We were sent home and I asked the community midwife if it would be best if I start bottle feeding Macy. “I cannot promote bottle feeding I’m afraid, I advise you keep trying”. I was exhausted, my child was clearly not getting enough milk from me and, defeated, I opened the breast pump and bottles I had brought for a “just in case” scenario and I began to pump!

Macy had her first bottle and the little clicking noise was still there, but now there was milk gushing from her nose as well. She was struggling to get any milk out the bottles, so I started making larger holes in the bottles in hope she would get enough.

The health visitor made the first visit and shared my confusion on these two “quirky” feeding characteristics.

My poor little girl was vomiting through the nose during the night causing her to sound like she was choking, all very scary! The health visitor saw us every week for the coming months, due to my concern. Eventually we were referred to a pediatrician, who said this behaviour was quite normal and that Macywas putting on enough weight so not to worry.

I was still worried! So the pediatrician to “put my mind at ease” referred us to an ENT specialist. The machine on his head was impressive, however after “thorough examination” the ENT specialist said he couldn’t see any abnormality except for a bifid uvula.

It’s probably not a Cleft palate he said, but we will see her in 6 months just to check again. Cleft palate?? I got home and went straight on google, and before my eyes I saw all the symptoms Macy had been experiencing. By this point Macy was 6 months old and starting to ween, seeing pureed broccoli and carrot pouring out of my child’s nose was not what I was expecting in this process! continued to worry and research Clefts, my health visitor referred me to another pediatrician again to “ease my mind”.

Cue the woman who took my concerns seriously for the first time, what do you think the problem is she asked me “I thinks it’s a cleft palate” I say. Within 24 hours I had received a phone call from a Cleft Nurse, and she asked me to explain what had been going on. “I can’t diagnose over the phone” she stated “but these are typical characteristics of a cleft palate”.

The next month we were at the Cleft Clinic being told that Macy had a cleft of her soft palate, hard to see, but easily seen by a specialist surgeon. Then the word “surgery” was being thrown around.

I felt intense relief to find out there was something that caused all these symptoms but then a feeling of intense dread to find out my little girl would have to have surgery. By this time Macy was 14 months old.

She had her surgery at 18 months. The first few days after surgery were not pleasant for Macy or us. But we got through it and she bounced back to being the happiest, cheekiest little character!

She has been receiving speech and language therapy to correct typical cleft speech and we are still having genetic testing done but she has come so far. She takes everything in her stride and quite enjoys all the attention she gets from health professionals when we have appointments!

We attended a sponsored walk for CLAPA in 2015, meeting other parents in similar situations was a breath of fresh air! I still feel emotional when I think of how lonely and isolated I felt in the first year of Macy’s life, when I knew something wasn’t ok but no one really understood what was happening. I am so lucky to have such a gorgeous girl, Cleft awareness is so important to me now, particularly with health care professionals, it’s astounding the lack of knowledge of Cleft Palate. Macy has just turned 3 and is the funniest little girl, she is thriving in school, doesn’t stop chattering away (maybe a little too much at times!) and I wouldn’t change anything for the world.

 

6 responses to “Laura’s Story”

  1. Thank you so much for sharing Macy’s story. It brought a tear to my eye. Our daughter went through a very similar situation. It’s so hard being told not to worry when you know something isn’t right. We received our daughters diagnosis at 8 months, followed by cleft repair surgery at 10 months. Following that, she was also found to have a congenital heart defect and an underlying condition called 22q. One of the best things I learned was to trust my instincts as a Mum. xxx

  2. well done laura for sharing your story it could help others in similar circumstances to get help earlier..she is a beautiful litle girl and has come off none the worse for her experience best wishes lindsey xxx

  3. So proud of you both Lauz, a brilliant idea to share your experience & hopefully will help any parents going through the same thing Xx

  4. This story is such a comfort to me because in September of this year my daughter was born with a soft cleft palate & she’s due to have surgery march/April next year. Luckily she’s been quite lucky feeding / gaining weight appropriately even though she has the orthodontic teats & squeezy bottles which is such a relief! Thanks for sharing your story ? Natalie xxx

  5. Thank you for sharing this story my son was born with a cleft palate. He is only 3 months, he is doing amazing through he drinks out of a bottle, he started with a feeding tube but hated it. He has a airway tube too hold his tongue in place, but he is a fighter and me and my husband are so proud of him.
    We haven’t got a date for his operation yet, but I’m starting too think about it. So nervous about it. xxx

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