Aidan’s Story, by his mother Faye
– Cleft palate
On the 26 August 2003, we welcomed our 10th anniversary present – Aidan, weighing in at a healthy 8lb 8 ½ ox, & 54 cm long.
Within a few minutes of him being born the midwife said “oh oh” (not something you want to hear when you’ve just given birth). It had been discovered that he had a cleft of the soft palate. I had no real idea what this meant (I’d heard the term “hare lip” but didn’t really understand what it was).
I was told “they’ll tell you a cleft baby can’t breastfeed, it’s not true, of course they can” which led us to attempt to feed, which was doomed for failure.
I really wanted to succeed in breastfeeding him, because I had struggled to feed my first son. Aidan tried, I tried, but it just didn’t seem to be working. Then, I was told “given the type of cleft he has, he should be able to use a normal bottle”. So we tried that. Again, it was doomed to fail.
The pediatrician who came to see us was very reassuring and stated that “of all the types of cleft he could have had, this one is probably the best one to have”. I remember walking around the ward in the middle of the night, unable to sleep and crying because I was in a room with 3 other women, all happily breastfeeding their babies and I felt like some kind of total failure – for having a child with a cleft – for not being able to feed him. I felt totally confused, lost and alone. The night duty nurse saw me and asked what was wrong. She gave me a shoulder to cry on, got me a cup of Milo, sat me down and said it’s ok.
The hospital had an old CleftPALS parent pack that they gave me to read through. This helped and I jotted down some phone numbers.
I made the decision – with the support of my wonderful partner Michael – that we would hire a breast pump, express what I could and bottle feed and, if necessary top up with formula. I committed myself to this for 4 weeks – if it worked great, if it didn’t I wasn’t going to beat myself up about it.
So we came home to our almost 2 year old and settled into a routine of express, feed, sleep. The sleep part wasn’t particularly successful however, as a feed would take up to 2 hours. I knew this wasn’t right. The expressing wasn’t working particularly well either and after 4 weeks I decided that this was just not going to work. Again I found myself constantly sad, tired and alone.
It was about this time that I remembered I had a phone number for CleftPALS. I rang a lady named Rachelle, who at that time was in charge of supplying feeding equipment. After a long phone call and fantastic advice from Rachelle we purchased a Qld squeeze bottle and a Pigeon cleft teat. The first time I used this, we went from 2 hours for a feed down to a little over half an hour – at last I could see a glimmer of hope.
During all of this, I was trying to deal with an active 2 year old and recover from the flu (which we had all had at the time I gave birth to Aidan), plus the constant appointments with various specialists – cleft clinic, hearing tests, ENT, M&CH, pediatrician, etc. it seemed that we had an appointment of some sort every week for the first 3 months of Aidan’s life. On top of all of this, when Aidan was only 2 wks old – Declan (our first son) came down with chicken pox which was promptly followed by a dose of gastro (which he shared with me). This gastro ultimately led to me ending up with a hernia.
We finally got to a point where the appointments eased off and we were just waiting to find out when Aidan’s palate surgery would be.
Early in 2004 the letter arrived – his surgery would be immediately after Easter. I decided that we would visit my family in East Gippsland for Easter, just to get away and try to relax before the day of surgery. I also took the time to attend a CleftPALS playdate at someone’s house. I asked questions about what to expect and was made to feel welcome.
Just after 12 noon on Wednesday, 14 April, 2001, at the Royal Children’s Hospital in Melbourne, Aidan was taken into surgery – and again the emotions took hold. I stayed with him while he was put to sleep, then I had to trust that he was in good hands with Dr. Andrew Greensmith. I asked the anesthetist to take good care of my baby. He assured me that he would fine. I walked out to the waiting room with my mother-in-law when the tears came. I didn’t know what to expect, would he be ok? Why did I have to put my baby through this? What had I done to deserve this? What had Aidan done?
I went downstairs to get some lunch before returning to the Parents Resource Room to meet Michael and his mum. When I was in the café downstairs I saw the anesthetist who had been with Aidan. I remember thinking “Why are you down here? You are supposed to be looking after my baby”. But I realized that there would be a whole team of people looking after Aidan and that they were entitled to have a lunch break.
Two and a half hours later Dr. Greensmith came into the waiting room and told us that everything had gone well and Aidan was in recovery. He had discovered that Aidan’s hard palate had a slight notch out of the back of it, but he did not believe this would cause any issues.
I now anxiously waited for our names to be called so we could go in to see Aidan. When I saw my baby, he face was a bit swollen, he had a large stitch through his tongue which was taped to his cheek. This was to keep his tongue forward and away from any swelling in his mouth. (We had been forewarned of this prior to surgery). Aidan was very upset and crying – he had come out of the anesthetic before his morphine drip had been set up, so he was in pain and distressed. I just wanted to hold him, to make him feel better, to let him know I was there. There was no way anyone (even his dad and grandmother) were going to hold him. He was mine, he was safe.
That first night was pretty terrible. He was unsettled and wouldn’t sleep. I think I got about 3 hours sleep in 36 hours. I’d snuggle him on the bed with me and get him to sleep, put him back in the cot and be just dozing off myself when he’d wake up again.
The following day, the stitch was taken out of his tongue, he had a bottle, and was much more settled, if a bit sleepy.
Later that day, Michael and Declan came in to see us and we made the decision that I would go home that night, leaving Aidan at the hospital. I was exhausted and in desperate need of a good night’s sleep. The staff assured me that if there was any problems they would call me and I was welcome to call at any time to check on Aidan.
I cried as we left the hospital – I was a terrible mother, leaving my baby there while I went home, but I needed to be well rested to take care of him when he came home the next day. I rang about 9pm to check on him and was told he was sound asleep and everything was ok.
The following day I received a call from the hospital at about 9am, telling me that Aidan could come home. I drove into the city to collect him. When I got to the 4th floor, I found Aidan happily sitting on the knee of a lovely male nurse, playing. I remember thinking you little ratbag, you’ve had me worried and here you are like nothing’s happened.
After 4 weeks of arm splints and 6 weeks of mushy food we had our post-op appointment and was told everything looked great. Over the next 6 months, Aidan developed like any other baby and began babbling away, cutting teeth, all those things he was supposed to be doing.
As his speech developed I started noticing some sounds came out sounding like he had a cold. When we received a letter from the hospital asking about his speech development I made a note of this nasally sounding speech that he had. A few days later, I received a phone call from the speech department at the hospital to discuss Aidan’s speech. They wanted to see me as soon as possible. This assessment resulted in us being told he would need further surgery to correct VPI (Velo Pharyngeal Incompetence) – a common problem with cleft children. I was devastated. I had to put Aidan through more trauma and pain. In the meantime, we had fortnightly trips to RCH for speech therapy and a video-fluoroscopy (an x-ray that shows the movement of the palate as the child speaks). The speech pathologists advice was that he would need a pharyngeoplasty.
At a pre-op appointment in late May, 2007, Dr. Greensmith informed us that he was reluctant to do a pharyngeoplasty because of Aidan’s age, but would do a fat graft instead. This would mean taking fat from Aidan’s tummy (using liposuction) and injecting it into the palate to bulk it up. He said that it would not totally fix Aidan’s speech problems and that he would probably still need the pharyngeoplasty in the future, but he felt it was a good step to take. So we consented.
In June, 2007, Aidan was again taken into surgery. This procedure still took over 2 hours, but afterwards Aidan was not as distressed as he had been after his first operation. Dr. Greensmith had not been able to get enough fat from Aidan’s stomach, so had had to take some from his thigh as well. Recovery from this operation was fairly quick and we were home the following day. Aidan was pretty much back to his normal self within about 2 days.
The biggest thing to come from this operation was not so much a huge improvement in his speech – although there was some improvement – but that on his 4th birthday he was able to blow out the candles on his birthday cake and could blow bubbles. Things he had never been able to do before.
Over the next 12 months, Aidan continued to develop into a real little boy. He had a minor, same day procedure in this time to remove a tooth. This was not cleft related, he was just being a typical boy and copied his big brother jumping off the bed. Unfortunately he landed badly and broke a tooth. This developed an abscess that was picked up by the dentist during a routine cleft clinic appointment.
We continued with speech therapy about once a month at RCH up to a point where the speech pathologist advised us to not push it too much, as his speech would not improve until after he had the pharyngeoplasty.
In October, 2008 Aidan was admitted for his next operation. I dreaded this one. Partly because he was that much older now (5 years, 1 month) and more aware of things going on around him. In the lead up to this operation I had tried to find someone whose child had had this surgery and when I couldn’t find anyone in Australia, I contacted a family in the USA whose child had been through it. Unfortunately, the results for this child had not been good and she had developed very severe sleep apnea and had had to have the surgery reversed. This did not instill much confidence in me. At the pre-op appointment, I asked Dr. Greensmith what would he do if he got it wrong. He smiled and simply said “we don’t get it wrong very often and if we do, we fix it”. Those simple words reassured me that this surgery was in Aidan’s best interests and we decided to go ahead.
After 3 hours we were allowed to see him. My heart broke. He had tubes in his nose (again due to swelling) and when he woke up the first thing he said was “take them out”.
The aftermath of this surgery was not pleasant. Aidan was distressed because of the tubes and constantly asked to have them taken out. He was sick (we have discovered he is sensitive to morphine) and absolutely miserable. After a rough night for both of us, I had gone downstairs to get a coffee while my mother-in-law sat with Aidan – he wouldn’t let me leave him for more that a few minutes at a time. When I came back I found I had my happy little boy back. The tubes had been removed, the morphine replaced with Panadol and Aidan was feeling much better. We were able to walk down to the other end of the ward to visit his friend Darcy who had had his pharyngeoplasty done the day before Aidan. We could go to the Starlight room to play, select videos to watch. Keeping him occupied became an issue.
The upside was, that within a short period of time I started to notice an improvement in some of his speech sounds. Looks like the surgery was a success.
Since then Aidan’s speech has gone from being impossible for strangers to understand to being able to be understood almost all the time. This has taken almost 3 years of speech therapy through his school.
At this stage Aidan probably does not need any more surgery, but who knows what the future holds.