Genevieve
Genevieve Yee - born 14th November 1997
Our story begins on the 14th of November 1997. Our daughter Genevieve was born very blue, it was said she was stunned from a very fast second stage of labour. We noticed she had a slightly different looking chin than our other three children. She was also making a lot of snorting noises. About an hour after birth it was time to breastfeed, and with this being unsuccessful I asked for a little help. It was then that her cleft was discovered. She had a large cleft of the hard and soft palate. I attempted putting Genevieve on the breast numerous times without much success, our baby was taken to the nursery every night while I was in he maternity hospital. This was a very emotional time for us.
Genevieve started feeding on a Haberman bottle and managed very well. I had decided I would express with the hope that I might be able to get her onto the breast at a later stage. Our lactation consultant was always there to lend a hand and was to be a lifeline over the months to come. Weighing 9lb 1oz at birth, Genevieve never had a weight problem, she put on half a pound a week and stayed up over the 50th percentile in the Plunket book.
Having Genevieve home was wonderful, but after just two days we started to notice her hollow looking chest. With a visit to the after hours surgery we were then admitted to Christchurch Public Hospital. She was having trouble breathing and needed oxygen as she was unable to keep her oxygen levels up by herself. She also had one spell where she stopped breathing. We were then told that she had Pierre Robin Syndrome. After several days she was discharged and we were sent home with a respiratory monitor, which was kept on at all times.
Pierre Robin Syndrome (P.R.S.) is a malformation of the lower jaw in the womb in which it does not develop fully and is restricted in size, consequently the tongue is placed back further and can drop back into the throat. We never did see Genevieve poke her tongue out until she was six months old! Also because of the P.R.S. we found she vomited constantly. Genevieve had the standard hearing test at eight weeks of age and this showed she could only hear fifty decibels. We had already noticed that she had a problem with her hearing, she had also suffered from her first ear infection when she was ten weeks old. We would have to try numerous antibiotics before it would clear up. Six weeks later she had another ear infection and again it was very hard to get rid of.
I was still expressing and finding it difficult keeping my supply up. Our lactation consultant was always there to help with this and suggested I take Latgo tea, milk flow tablets, and complan. In the time I expressed I had the electric pump replaced three times. I always had formula on hand just in case, but Genevieve would not accept this, no matter what formula I tried. I introduced solids at four months. We first tried it runny but found she coped better if the consistency was thicker as she would sneeze a little food up when it tickled the back of her nasal passage.
When we first spoke with the Plastic Surgeon, we were told that Genevieve’s palate repair would be done at 12 months due to her P.R.S. (this is later than it would have been for a cleft palate not associated with P.R.S.) The next appointment with the Plastic Surgeon was when Genevieve was 4 1/2 months old and her repair was brought forward to 9 months.
We were happy with this decision. I was aiming to express until she was six months old but now I would carry on a bit longer. When Genevieve was five months old her suck improved and the Haberman was no longer suitable as the milk flow was too slow to keep up with Genevieve’s demand. We then changed to a Chu Chu teat (without the squeezy bottle), which she was much happier with. I contacted the surgeon again and her repair was brought forward another month. Genevieve would be eight months old on the day of surgery. Two weeks before surgery she came down with the worst ear infection ever. I recall taking her to the Doctors three days in a row, we had to get her well for her pre-admission and it worked.
At pre-admission she had photos taken, blood taken, swabs and a general check up. It was decided that grommets would be put in at the same time as the palate repair. On the day of surgery (I was relieved that that day had finally arrived), the repair took an hour and fifty minutes. Her ears were worse than expected with blood in her middle ear. The time spent in hospital was hard and upsetting. Neither my husband or I were prepared for the pain that she would be in. Genevieve had a lot of trouble feeding after the repair, and it took a month before she would drink an acceptable amount of liquid. She caught influenza while in hospital so her recovery was slightly delayed and she was discharged five days after the operation.
Ten days after the repair the stitches gave at the top of her palate and we discovered a small hole. Another setback. I made the heartbreaking decision to stop expressing. She was now nine months old and she went onto Soya formula (the only one she would take). We still cut large holes in her teats. It wasn’t until a few weeks later that she started to show signs of sucking. So we tried a fast flow teat and with that she hasn’t looked back. We also noticed that her vomiting stopped after the repair.
At our last appointment it was discovered that her hole had closed by itself. She has since had another ear infection and had the respiratory monitor taken off. Her recent hearing test was a 100% pass. Having the grommets put in has made the biggest change in Genevieve. Her jaw has come out a lot since birth. Her eyes have been checked once and this will be repeated every six months as short-sightedness goes hand in hand with P.R.S. Genevieve is a very happy and healthy girl and despite all the hardship suffered thus far we consider ourselves blessed to have her.
Update - December 1998: Genevieve at 12 months is now wearing glasses as it was discovered that she is indeed short sighted.
Contact Vicki Yee via snail mail: 96 Gloucester Street, Christchurch or via the Christchurch support group phone numbers (see noticeboard).
