Rebecca
Rebecca Morgan Telling - born 20 October 1996
Our second daughter, Rebecca was born on the 20th October 1996 and her cleft was picked up soon after birth by our midwife. Rebecca’s cleft was about 1cm wide and went up the middle of her palate stopping behind the gum line, her uvula was also split in two. The initial diagnosis by the paediatrician was a cleft of the soft palate but we were told the plastic surgeon would try to see us within the next couple of days. My plans for an early discharge from hospital were discarded and I spent the next three days on the maternity ward of North Shore Hospital trying to feed Rebecca and coming to terms with what had happened. I remember her crying one night and just not being able to express any more Colustrum for her, I had to ask the nurse to take her away and feed her. After breastfeeding our first daughter so easily, having to do this seemed such a failure.
As things turned out, no one was available to come and see us in hospital and we did not get an appointment at Middlemore until the 5th of November. At this time we found out that the cleft affected both the soft and hard palates.
As a result of the limited information we were initially given, I spent a very frustrating two weeks trying to breastfeed Rebecca and express milk which we fed to her from a small cup. I was quite determined to try breastfeeding her, even resorting to using a Supplemental Nursing System - a bottle of milk was hung around my neck with thin tubes attached to each nipple. Milk then dripped out into Rebecca’s mouth as she tried to suck on the breast. I found this arrangement rather amusing but not terribly successful for us! By the end of the two weeks we had “invented” our own method of feeding her with a normal fast-flow teat which we squeezed into her mouth. When we were finally put in contact with the speech-language therapist, we were introduced to the Haberman and Chuchu bottles which are designed for feeding children with cleft palates. We tried both these bottles for a while but eventually settled on the Chuchu bottle as we felt Rebecca had a chance of actually feeding herself when she was stronger.
The next few months were hard work and I was determined to express milk until after Rebecca’s operation. I had in mind that she might be able to learn to breastfeed after her palate was repaired so wanted to keep the milk supply going. Sitting down with a breastpump every three hours simply became part of our life.
At about 8 weeks of age I noticed that Rebecca had stopped “talking” to me and it was found that her ears had filled with fluid (glue ear). We knew she would be prone to ear infections which further motivated me to express breastmilk for her.
We next saw our surgeon, when Rebecca was 6 months old. At this appointment we were told that although they aimed to do palate surgery at around 9 months, the waiting list was such that she could be called up much later. We were also told that we would only get up to a weeks notice of her surgery.
We started trying Rebecca on solids from about 4 ½ months, but weren’t really successful until she was about 7 months old. She just didn’t seem to have that “sparrow” reflex most babies have when a spoonful of food comes near. Once the food was in her mouth it would then either dribble out or she would choke on it. With a lot of perseverance she eventually feed well by being propped up in a Plunket baby carseat. The angle helped her keep the food in her mouth and she learnt to swallow it rather than choke on it.
I continued trying to feeding Rebecca on the breast just to see what would happen. We had a couple of really special feeds where I would hold her onto the breast with one hand and express into her mouth with the other but I was never sure how much she was getting using this method. When she was about seven months she bit down on my breast and tried to chomp (as she had learnt to feed from the Chuchu bottle). I came to the conclusion that breastfeeding would not work, especially since we had no idea when her surgery would actually happen.
When Rebecca was 9 months old we found out we were expecting our third child and I weaned myself off the breastpump. I went down to just 3 pumps a day when Rebecca was about 8 months old, then stopped totally at about 9 months. I also managed to freeze a couple of litres of milk which she fed from in the week following her operation. Rebecca had her one and only ear infection when she was about 8 months old, I like to think all the hard work expressing milk for her had helped to prevent any more infections.
After several phone calls and letters we were given a provisional surgery date of the 3rd September. Since my parents live in Australia, we asked them to come over to look after our 2 ½ year old, Chrissie. To cut a long and very frustrating story short, the day before we were due to book into Middlemore we were informed that there would not be a bed available and surgery had been postponed. Unfortunately my parents could not change their booking so they ended up having a bit of a holiday and we ended up with no-one to look after Chrissie when Rebecca’s surgery did come up.
By the time we were admitted to hospital on the 16th of September, I was just so glad to finally be there that a feeling of relief took over any fears I might have had about the surgery. Rebecca was nearly 11 months old at this stage.
We arrived at 11am as instructed and were placed in a single room. Rebecca’s temperature and pulse were taken then we were left to our own devices. We ended up spending all day in the playroom as nothing actually happened until 4.30 that afternoon when another couple with a baby with a cleft lip arrived. Once they arrived the blood test and x-rays were completed in half an hour. We also finally saw a couple of doctors and were told the procedure for the next day. We were shown a baby doll dressed up as if it had just come back from cleft surgery - this helped to prepare us for what Rebecca would look like the next day. As we were second on the surgery list for the next day we asked to go home for the night and came back the next morning.
We returned to the hospital at 10am as instructed and Rebecca was dressed in some rather large hospital pyjamas and the arm restraints were put on. She seemed mystified by it all but generally wasn’t bothered. I carried her into theatre at about 12.30pm and held her whilst she was given gas and went to sleep - she struggled a little but was very soon fast asleep. I then had to place her on the table and leave. David & I went out for lunch nearby then came back to the ward and tried to kill time before we could see our daughter again.
Finally at about 4.15pm the ward received a phone call to say Rebecca was ready to be collected from recovery. We went with two nurses (carrying a suction unit) to collect her. She was bundled up in a blanket and looked very hot and dozy. She had vomited up some blood already so was also a bit messy. For the next couple of hours I sat and held her, rocking her back to sleep whenever she woke. She was sick again and we were grateful to have a nurse sitting with us as it was quite frightening. I didn’t think Rebecca even knew who I was until I handed her over to the nurse so I could eat some tea - she opened her eyes and gave me one of those heart-pulling looks. David held her while the tongue stitch and tubing down her nose was removed and I spent a little time with Chrissie who had come in to visit. Chrissie was not too keen on the sight of Rebecca, but relaxed a lot once the tongue stitch and tubing had been removed.
That night I slept on a bed next to the cot and Rebecca spent most of the night lying with me. She was still attached to the drip at that stage but was waking more often and wanting comfort. At about 5am she woke again and gave me a weak smile. From then on things got better, she even managed some pureed fruit that morning and took some milk. She dribbled copiously for the next couple of days but was otherwise back to normal as long as I was nearby. Prior to the operation Rebecca had always been quite outgoing and confident but she became very clingy and attached to “Mum”. This lasted for months afterwards, as did her distress at the sight of anyone of the medical profession.
We were discharged for “weekend leave” on the Friday afternoon as all was going well. Rebecca was feeding from either the softcup or flexi-cup depending on her mood (quite unpredictable). The weekend was uneventful and we returned to Middlemore to have the packing removed from her mouth on Monday morning. Unusually, her palate bleed quite a lot when the packing was removed and I had to stay around the hospital with her for the rest of the day. We were then allowed to go home but she bled several times over the next day. We cut out the solid feeds and she was just given thawed breastmilk in the hope that this would speed the healing process.
When we saw the surgeon 5 weeks after surgery a small hole (called a fistula), the size of a match-head had developed. He thought this might heal of its own accord, but she was otherwise discharged for a year until her next check-up.
Since grommets were inserted at the time of palate surgery Rebecca’s hearing and speech development quickly improved. Her fistula has indeed healed, and looking into her mouth, other than the absence of a uvula, you would never know she had been born with a cleft palate. Her confidence has returned and she is now quite happy to sit in a chair and let the GP look in her ears or listen to her chest without screaming.
I have found with the birth and breastfeeding of our third child, a lot of issues not faced at the time of Rebecca’s birth have been resolved. Although Daniel was something of a “Whoops” he has instigated a lot of healing and we now feel our family is complete.
If you would like to talk about anything written here I can be contacted at michelle@moose.co.nz
