When Donna was twenty weeks pregnant a routine scan picked up a condition which would see Royal Manchester Children’s Hospital becoming a familiar place for the family. Here Donna tells us about her journey…
I couldn’t wait for the 20 week scan to check everything was ok with the baby, as having previously lost three babies I was worried something might happen with this one.
I headed to Saint Mary’s Hospital with my partner Dwayne. During the scan the sonographer spotted something and we were told that the scan had shown that our baby had a Cleft Lip, a gap in her upper lip and there was also a possibility her palate was affected. We were visited the next day by a member of the Cleft team at Royal Manchester Children’s Hospital to explain in more detail what the Cleft lip would mean for us and caring for our baby. We were also sent for a 3D scan to look more closely at the Cleft.
I knew that the Cleft lip would affect how the baby would look but I wasn’t bothered about that; I was worried about what other people would think and how I would feel if they stared.
The 3D scan showed a large Cleft lip but they couldn’t tell if the palate was affected. As this scan had purely been to assess the Cleft I decided to book a private 3D scan to bond with the baby - which I took my mum and sisters too. It was lovely to see the baby and I couldn’t wait to meet my precious little one. It was during this scan that the baby put its tongue in a place it shouldn’t have been able to go, which meant they were able to tell us that the palate was also affected. It was a relief to find out the lip and the palate were affected as it meant I could prepare myself properly.
Throughout my pregnancy the cleft team kept in touch and I joined a pre-natal group, arranged by the cleft team and met other parents going through the same as me. Due to having signs of preeclampsia, I was admitted to hospital to have the baby when I was 36 weeks pregnant. It was really reassuring to know that the Cleft team were just down the corridor in the adjoining hospital.
In December 2012 we welcomed our beautiful baby girl Faith into the world. A member of the Cleft team came to see me the next day - which was the weekend, but luckily they are on call and available 24 hours a day. They taught me how to feed my baby, as there is a slightly different technique and Faith was unable to suck from a bottle, however it didn’t take us long to get the hang of it. Faith also had to sleep differently – we had to place her on her side and I used blankets to stop her rolling on her to back. We were delighted when we got to take her home.
The Cleft team were a great support; to start with Dianne, the clinical nurse specialist, visited every two days to make sure we were doing OK, and then as we became confident in how to care for Faith, the visits became less frequent.
At first I found it really hard trying to go to normal baby sessions as I was worried how people would react to Faith - I’d even find myself introducing Faith and her Cleft. Eventually I found a great baby massage course and all the mums were great and we are all still in contact today.
When Faith was four months old she underwent her first surgery – this was to close up the gap in her lip and start the repair on her palate.
I completely trusted her surgeon Mr Whitby from the first moment I met him, when Faith was only a few weeks old. I knew she was in really good hands but I couldn’t help but worry about the surgery and how it would change her. I loved Faith with her Cleft lip and I worried how much the surgery would change her looks. I took Faith down to theatre and it was awful watching the mask go over her face and her being put to sleep - it was three hours before I saw her again. When I did, I did a double take I couldn’t believe how she looked and what a great job they had done. I still loved her. It took me a while for me to get used to this new look Faith as it was such a drastic change!
After a few days in hospital we were sent home. We just had to attend out-patients for checks up and for a review of the surgery.
In August 2013, Faith underwent her second operation at Royal Manchester Children’s Hospital. Again she was in theatre for about three hours and this time when we got her home it felt like a harder recovery for her and she needed a lot more comfort from us.
Dianne, from the Cleft team, came out to see us again and she could see that Faith had developed two holes and a slit in the roof of her mouth which meant that the surgery hadn’t completely worked - I was devastated. Dianne reassured me that the holes can close on their own and they almost did – we were left with just a small hole in the end.
When Faith turned one her appointments became more in depth as she also started having hearing and speech and language tests. Her Cleft means Faith has hearing loss in both ears and has to wear hearing aids. Her hearing fluctuates and there is a possibility that she when she gets to secondary school age she will no longer need them.
The hole in her palate also impacted on her speech so it was decided that she would have a third operation to close up the hole left from the second operation and also lengthen her palate to help cover her nose and hopefully this would help to improve her speech. My biggest fear has always been that she won’t be understood and people will lose patience with her and not take the time to listen to her. So although I was anxious about Faith having the operation, I was also relieved that it would help her speech.
I took her down to theatre for the third time, dreading the moment she would be put to sleep. Instead of the mask they were able to use a cannula to administer the drug to put her to sleep and they distracted her with bubbles – so much so she fell asleep with a smile on her face and that instantly made me feel better – I didn’t feel the same level of guilt I normally felt.
After a review with the Speech and Language Team, it was decided that there was not a massive improvement in her speech and she was referred for an X-Ray to see how her palate reacted as she talked. Her palate was still too short; so once again she would have to go back to theatre.
This time she was referred for a procedure that I call a Buccal Flap operation – it really isn’t a pleasant thing but it would give her the best chance for the future. In this operation they would separate her palate to push it back further and then take strips from the cheeks to help cover the gap. In May 2016, Faith had her fourth operation and was one of the youngest patients to have this procedure done. She bounced back really quickly.
We are now waiting to see how this surgery settles, which could take anything between six to 12 months. There is a small hole again at the top of her palate but we are hopeful that this may close naturally over time. We have a review in a few months’ time as her speech hasn’t improved as we expected. She may need another x-ray to check how it moves and then a fifth operation. It’s easier to expect that we will so there is no disappointment on the day. I would rather get the news that everything is fine, but I find it easier and can prepare more when I think it’s not. If I expect the worse than everything else is a bonus
For now she will continue to have a yearly review – these appointments often last a few hours as we have to see all the different specialists that are involved in the care of a child with a Cleft lip and palate. Along with seeing Mr Whitby, Dianne, the hearing and speech and language teams and having X-rays of her face whilst she is talking, we now also see the dental team as her condition could affect the growth and alignment of her teeth. Luckily for us Faith’s baby teeth have come out nice and straight. When Faith gets her adult teeth, she will need another operation to fix the notch in her gum using bone from her hip and lots of work with the dentist to get her teeth filling that repair.
These appointments all take place on the same day and in total can take up to three hours, which means waiting in a very compact waiting room in between each appointment and trying to keep Faith occupied, which is hard for any young child.
The Cleft team have been, and continue to be, a great support to my family. I know if I have any concerns then I can just call them and they will help to reassure me and provide me with help. We completely understand why the appointments take so long – so we can see all the specialists at the same time and to save us having to come back at different times.
Faith is fully aware of her condition and we are relieved and delighted that she has grown into a very confident little girl. The treatment for her cleft is a long journey which will continue into her adulthood. I still have worries about her communication skills and how others will view her, as she does have a scar. People, who know her, don’t see it as it is part of her, but I worry how other children will see it at school and how she will answer any questions about it when I am not around to guide her. Luckily thanks to the baby massage course I did, Faith has developed some great friendships with children who have been there every step of the way over the past few years and have seen how the Cleft affects her. I’m just hoping that some of these children will join her at school – as they accept her for who she is, and don’t treat her any differently.