I have written this blog a million times in my head but I finally thought it was time that I actually put pen to paper and wrote about my journey. I decided to write this post and share it so as to hopefully give others a greater understanding of my daughter’s challenges. But also, if you are a parent, friend or relative that knows and loves a child like mine, then it may nudge you to get him or her some help. I hope my story reminds you that there is always a light at the end of the tunnel.
A little Intro
My daughter Emilie, 3, is a very happy little girl who loves Paw Patrol, riding her scooter and listening to stories. She is my second child and has a big brother, Benny, who is five years old. When Emilie was born via C-section, she struggled to feed and after lots of trying and tears, she was bottle fed. She struggled with that too and we quickly moved her up to the larger teats but still it would take her ages to drink a bottle.
Although she slotted perfectly into our family, looking back I always had a small feeling that something wasn’t quite right. I was caught up in the usual juggle of having 2 young children and so I can’t quite remember the little details that were niggling away at me. She never wanted a dummy but was she was generally a very content baby.
As time went on she began to make some sounds but not the usual baby babble that Benny had made. I just kept thinking to myself that all babies are different and I shouldn’t compare her to anyone else. She would cry and make some sounds so I tried to dismiss my doubts. We encouraged her to say things like mama, dada..etc as you do but she just said ‘addy’ for daddy and very few ‘words.’
My two year old
Fast-forward to her two year check, and out of the (huge) amount of words that a child that age will be ticked off to say that they had, my child had 5 and actually I would say some of them were just parts of words. I felt everyone around me were saying not to worry and that Emilie would talk in ‘her own time’. Deep down I wasn’t convinced. When she was two years and nine months I knew she had not made much progress since her two year check, and I had another child so knew the rate that he had learnt to talk. By the way, he talks non-stop! I even began to think that maybe her brother was not allowing her to talk; how could she get a word in edge ways with him around?
Finding some answers
I finally got myself together and contacted a private speech therapist. I just needed to know how to help my daughter to speak and communicate effectiviely. That appointment changed everything. The therapist was amazing and assessed Emilie as well as looked in her mouth. She told me something that no-one had ever pointed out or mentioned before.
Emilie’s mouth had a gap in it at the back. Her speech delay was a physical thing and nothing I could’ve done would have changed the way Emilie was. I remember just thanking her and getting in my car with tears running down my cheek. They were tears of relief that finally someone had told me what could be wrong, guilt that I hadn’t picked it up earlier, worry for what the journey ahead would be like. Tears and then a million questions were swimming around in head: how many operations would she need? Would she ever speak properly? Would we need to sign?
Doctors and Hospitals
A few months later we got an appointment at the specialist cleft unit in a hospital an hour from home. I was dreading it but also knew that the people there would hold the answers to all my questions. The team there were amazing and we were met with speech therapists and a consultant. It was confirmed that my little girl had a gap in her soft cleft palate and would need an operation to correct it as well as years of speech therapy. She will learn to speak but she has a lot of catching up to do as well as a lot of re-learning but the main thing was we knew she would get there. The soft cleft was missed in her new born check but the team explained how tricky it is to spot.
Most children with soft cleft palate are picked up earlier and the team only see a handful a year that are Emilie’s age. We talked through some of Emilie’s milestones and I was asked a lot of questions. I found out that Emilie would not have been able to breast-feed or have a dummy as she didn’t have the muscles and sucking ability!
Waiting for the Operation
The operation was booked a month from that appointment, at the end of August. I had heard of cleft palate before but not ever the soft palate. Without getting too medical and using technical vocab, which I honestly can’t always remember anyway, this is a simple way to describe it: The back of Emilie’s mouth did not form correctly and had not closed during her physiological development resulting in a gap being left.
In the following few weeks I learnt a lot. She had a hearing test, which at the time I didn’t think much about. I had no concerns about her hearing, nursery had never mentioned anything and no one had ever said she couldn’t hear well. I mean, yes she was a 2 year old so could be a bit ‘selective’ at times, but what child isn’t? The hearing assessment came and she failed most of it. I learnt that this is common for children with a cleft as they don’t have the muscles at the back of their mouth linked to their ears. So the operation would involve closing the soft palate gap and inserting grommets to help with her hearing.
We needed things put in the calendar to distract us from the countdown to the operation. One of them was spending a weekend at Gloworm Festival with Little Learners which was fab! The end of August slowly crept closer and Emilie had her operation. We stayed in hospital for four nights and I found it hard. Emilie was a little brave soldier but didn’t like the fact she wasn’t allowed to eat normal food. We had to step backwards and go back to our weaning days of purées, Ready-Brek and everything soft! Emilie loves food and she was not a happy bunny being restricted to a certain blend of food. We got home and my son started school for the first time a few days later. I was on an emotional rollercoaster!
A different child
Fast-forward 3 months and life is so different. I have literally had to count the months on my fingers a few times in whilst thinking, “How can that only have been 3 months ago?!” We are now at the beginning of December and so much has changed. Emilie has grown in confidence and is speaking so, so much more. She is experimenting with new sounds and this week said a three-word sentence! When I opened the car door she just pointed to her seatbelt and shouted ‘get it off!’ I had not picked up that her hearing wasn’t great but boy can we all tell the difference now. She listens and responds so much better.
The operation wasn’t a quick fix and she won’t speak straight away as the muscles have not been used in that way and with Emilie’s age she has picked up some bad habits which will take time to change. We have continued to see the private speech therapist and thankfully, Emilie loves going. We also have continued support from the cleft team and have been assigned NHS speech therapy from January. Emilie still has a long journey but I can now finally believe that she will get there. Her confidence and her self esteem will get her there. I am so proud of what she has achieved in such a short space of time!
Looking to the future
Wow I didn’t start this blog thinking it would be so long but it has been good to get it all down on paper. I wrote it to make people more aware of soft cleft palate. I had never heard of it before it was mentioned with my child. If your child or someone you know is struggling with speaking and pronouncing sounds then it could possibly be their soft palate.
There is a lot of support out there for families and some truly amazing charities. I have learnt so much from my experience; I have learnt to follow my instincts, smile more and to remember to take a step back and reflect. It’s so important to look back sometimes – reflecting helped me to realise just how far Emilie has come on her journey.
Thank you for reading.
Love Lene, LL Basingstoke xx