Brodie
Brodie Jack McDonald de Gouw - 27 November 1995
Brodie was born on 27 November 1995 at Christchurch Women’s Hospital after a rather long labour involving an epidural and forceps delivery. My first glimpse at Brodie instantly raised a question in my mind, why was his lip “hooked” up and why wasn’t it coming down…it was at that spilt second that I realised that his lip wasn’t going to come down and that he had a cleft. I don’t know how I knew that it was a cleft, I hadn’t had any experience with this before. My next thought was that this wasn’t my baby at all, and that I didn’t want him, well not looking like that. The third and final thought over that period of time was that I loved him and he was my baby and he had a cleft; all in that order. My husband Bart saw only the new baby we had and was in total awe of this new little person. His reaction was so different to mine; he saw the baby as a whole and all I could see was the cleft.
A paediatrician was called to the hospital and Brodie was checked out; mainly to confirm that he had a cleft lip and not a cleft palate as well. Brodie had what is termed a partial unilateral cleft lip; which meant that the cleft was to one side (the left) and was not complete, (did not go into his nose). Not long after the examination I was able to breastfeed Brodie.
The next few days in hospital went relatively smoothly, Brodie was breastfeeding well, mainly due to the cleft being relatively minor and that my breast tissue was sufficient to fill the gap left by the cleft, thereby meaning that suction was such that he could feed. The plastic surgeon visited, checked his cleft and suggested that she see us at 6 weeks and then that surgery would probably be performed when Brodie was 3 months old.
The nursing staff at the hospital were kind, but none ever referred to the cleft, they asked how feeding was going and had I seen the plastic surgeon, but never asked how I was feeling. I was given a booklet about clefts, which was informative but didn’t help the way I was feeling at that time. On the outside I guess that I was coping pretty well, but on the inside I was weeping. Weeping for the baby I had expected, and weeping for the one that I had. It wasn’t that I didn’t love Brodie or that I felt any rejection toward him, I just couldn’t believe that this had happened to us. I wondered how over the 9 months of my pregnancy that I could not have known that this was how Brodie looked. I knew that it wasn’t possible to have known, but this was not the baby that I had imagined and dreamed about. We had had a scan at 20 weeks and then again at 32 weeks, neither of which had detected any abnormality. I realise now, that scans are not infallible and that having no history of clefting in our families meant that there was no reason to suspect our baby would be cleft affected.
We brought Brodie home from the hospital 5 days later, and settled into the usual pattern of life with a new baby. Right from the start Brodie was a delightful baby, very sociable and loveable, and was able to charm anyone that came his way. He didn’t sleep as much as I would have liked and did cry quite a bit over those first few months, but he was great; cleft and all. Brodie has the most beautiful big brown eyes, and they always gave him away, and gave us something to focus on other that the cleft.
We saw the plastic surgeon again when he was six weeks old and she scheduled Brodie’s surgery for 28 February 1996, providing that he continued to put on enough weight. We looked forward to that day with excitement and trepidation.
Over the three months before the surgery we had many questions from people about Brodie, which we took in our stride, mainly by being very open and honest about what was “wrong” with him. When I look back now I wonder how I coped, but I guess I did because I had to. There was never a time that I felt ashamed of Brodie, and I always took him out and about with me. Our family and friends accepted Brodie unconditionally, which was very important to me and I am so thankful for that. I was always afraid that people would not like him because of the way he looked, but everyone accepted that he had his cleft and that was how he looked and that was that. I think that the most important thing for family and friends to support and accept and empathise rather than sympathise.
The day of Brodie’s surgery finally arrived and we took him into the hospital at around 7am. His surgery was scheduled for 8.30am so we settled into the ward and went through the usual presurgery procedure. The orderly came to get Brodie and we were allowed to go with him as far as the pre-op room and then one of us was able to him into the theatre. By that time I was very teary so we decided that Bart was in a better condition to take Brodie in and hold him while they put him to sleep. I could never have done that, I’m so thankful that Bart was able to.
We spent the next hour or so having coffee at a nearby cafe, trying not to think too much about Brodie. We went back to the hospital and waited a while longer until the theatre staff rang to say we could go up to recovery. I remember walking in and seeing my wee boy lying there, and instead of a gap in his lip, he had whole lip, it looked so good! We were amazed at how good his lip looked.
When he woke up, the first thing Brodie tried to do was smile at us! What a wee darling. We went back to the ward and I was able to breastfeed him immediately. The rest of the day went by, with Brodie having some pain relief and sleeping most of the time. Brodie took the operation in his stride as was normal for him. We spent that night in hospital and went home the next afternoon. My mother came to stay for a few days to help look after Brodie, which was invaluable. Brodie had to wear splints on his arms to keep from banging or hurting his lip. We kept these on most of the time when he was awake, but not so much while in bed as we had always wrapped him, which was good as it was beneficial now when his hands needed to be kept away from his face.
After 5 days the external stitches to the lip were removed, which was also a rather harrowing experience. Bart held Brodie while the nurse took the stitches out and I went for a walk around the ward of the hospital. Unfortunately I could still hear Brodie crying, although it turned out he didn’t like having his head held so still, and the crying was not in pain, as I had imagined.
We had another check with the surgeon when Brodie was 6 months old and then again at the end of the year when he turned one. She was very pleased with the repair, as were we. The only thing I was concerned about was that Brodie’s lip still looked quite thick about the repair, but the surgeon explained that there was an excess of tissue left from the initial surgery, which it turns out is good, as it allows for the lip to grow without pulling tight. From then life continued as normal, with many people asking whether my baby had had an accident or fallen over. Sometimes this made me feel pretty bad, that I had allowed something to happen to Brodie, which of course was not the case. We still get asked this, due to the scar, and I am always honest about what happened with Brodie, even when it would be easier to agree and pretend he just had fallen over.
We saw the plastic surgeon again at the end of last year (1997), along with a group of other medical staff, including Senior plastic surgeons, registrars, speech therapist, orthodontist and dentist. They all concluded that things were fine with Brodie, the only hiccup being an extra tooth in the gum on the side of the cleft. The extra tooth is normal for some cleft children and we have to “wait and see” what will happen with his adult teeth. The plastic surgeon has decided to thin Brodie’s lip and lift the left side of his nose (which is a little flattened) when he is four.
Brodies’ speech has not been affected by his cleft, and so far his life has progressed like any other child. He has not yet asked us about his lip (1998), although he does know that he had a “special” lip when he was born. I have a children’s book about an angel with a cleft that I will show and read with Brodie when it becomes appropriate. Brodie has suffered from many ear infections, but our specialist has said that this is unlikely to be as a result of the cleft, as can be with some other cleft affected children. We saw the Speech Therapist at Christchurch Public Hospital in late 1998 to assess his speech. He seems to have no major problems in this area, (I could have told them that….he is rarely ever not talking!!!) and will be seen again along with the Cleft Team on 1 November 1999.
Brodie has recently ( April 1999) taken a great interest in his baby photos and videos. He commented on his “funny little screwed up face” in some of the photos, and that he had a “triangle lip”. This is the first time he has really noticed anything different about his lip. I just said that he had a little gap in his lip when he was born and that the doctors fixed it up. He is so nonchalant about it all, it seems to matter much more to me than him. Brodie has such a wonderful outgoing personality that he takes life head on and I expect that this whole ordeal will not bother him to any great extent. I am so pleased about this.
For us, the experience of having a cleft affected child has been difficult but in hindsight not as difficult as it could have been. I have not had the feeding difficulties that many parents of cleft affected children have, but emotionally it has taken it’s toll on me. After Brodie turned one I began to suffer from depression and what my counsellor described as post traumatic stress syndrome. After a course of antidepressants and some counselling I am now over that, and the proud mother to another child, Breanna, who is not cleft affected. My husband Bart has been a tower of strength through our journey with Brodie, he has coped so well when I have not, and been there to share the joy also.
To parents of a cleft affected child; I understand how you are feeling, I have been there, and have come out the other side. Celebrate the wonderful child you have, your baby is still a miracle of life, treasure him or her. Should you need to talk and share with someone, I am very happy and willing to do so.
To the families and friends of cleft affected children; support the child and his/her parents, be there to listen when that is needed, don’t deny the parents being able to just talk and get things out in the open, you don’t have to have any solutions, just listening ears and an open heart.
Contact Bronwyn & Bart De Gouw via e-mail: bartbron@xtra.co.nz
