Sarah was born in 1992 and was a sister to Siobhan who was three years old. Sarah’s was a difficult birth but her weight was a healthy 9 lbs 11 oz. The first sign of problems started after just a few days with what appeared to be colic. After just three weeks the vomiting started and after two days we returned to hospital to have Sarah checked and rehydrated. This sequence of events continued for the next two years with vomiting returning every 8 to 10 weeks. Several tests were run over this period including barium meals and allergy tests. The test results appeared to be negative and the diagnosis after 18 months was that Sarah had Cyclical Vomiting Syndrome.
Sarah’s condition worsened after she was 2 years old and the hospital stays increased to 10 to 18 days. She was extremely ill and suffered immense pain and dehydration. We decided we needed a second opinion and got our GP to send us to another consultant. After one visit the new consultant suggested we ask for a referral to Great Ormond Street. We did this and eventually after about six months had Sarah seen by a consultant at Great Ormond Street. Sarah was checked in clinic and more tests were done (another barium, ultra scan etc.). The technician on the ultra scan was convinced he saw malrotation but the registrar overruled this. At the next consultant’s appointment I suggested this may be the cause of Sarah’s condition, but was told that the report from all the staff doing the tests showed nothing. We did not see the consultant at Great Ormond Street again, as he was ill for 18 months and they did not keep Sarah’s appointments up.
Sarah’s condition seemed to fit the pattern of cyclical vomiting so we began to accept that she had this condition and tried to adapt our lives to her illness. Our local hospital was very unhelpful and her clinical treatment was poor so the fact that her attacks took between 10 and 18 days to clear seemed not that abnormal. What should have raised alarm bells with the medical staff at our local hospital was the complete closure of her bowels at the beginning of her attack and the opening when the attack had finished. Another sign of problems was the green bile (dark green), which we have been informed, is a sign of a blockage. However these were consistently missed.
In an effort to get the clinical treatment of Sarah improved we went to two private consultations with Dr. Nigel Meadows at Bart’s. Dr. Meadows was very helpful and introduced us to the methodology of Dr. Fleisher’s management of CVS.
We tried the correct methods at our local hospital and met with some success but this was very patchy. We again put this down to poor clinical procedure. This went on until Sarah had a major attack in January 2001. She had been having 5 –7 attacks per year every year of her life. After eleven days in hospital we asked to be transferred to Dr. Sonny Chong at Queens Mary’s Hospital for Children at Carshalton for two reasons, she was getting worse at our local hospital and Dr. Chong was a specialist in CVS.
She arrived at Queens Mary’s and after Dr. Chong spent 3 hours with her he started his own regime of drugs and fluids and after two days she appeared to be better. Her bowels had opened and she had not vomited for a long period. However this was a temporary relaxation and she started again. The drugs and fluids were started again but response was slow. At this point Dr. Chong suspected that Sarah may not have CVS and he called for the original X-rays from when she was 3 and 15 months respectively and organised several tests. After an ultra scan and a confirming barium meal Sarah was confirmed as having malrotation of the intestines. The original X-rays also showed this condition.
Then we had the shock, the surgeon visited at 11.00 and simply said she had to be operated on that afternoon. We both nearly died of shock but as usual Dr. Chong was very supportive and kind and helped us through. We were transferred to St. Georges that day and Sarah was operated on the next evening.
Sarah has made a full recovery and is no longer in pain. This is the worse part knowing that Sarah was in pain all her life until this operation.
We would both like to personally thank Dr. Sonny Chong for his dedication and his ability not to simply accept a diagnosis but question when the diagnosis does not seem to fit, a true Doctor. Dr. Samuel and Dr. Simon at St. Georges for their support and skills. Dr. Samuel for using his time off to operate on Sarah and Dr. Simon for his support after the operation and his skill in helping us get through the first night. We would also like to thank both Madge and Stellar (Senior Staff nurses) who seemed to appear from nowhere when the pumps alarmed and their skill and support was exceptional.
The moral of this story is never accept a diagnosis until everything else has been ruled out. It was clear from her second barium meal she had malrotation and this was missed. Sarah has suffered needlessly over 7 years and will take many years for her to regain the ground she has missed.
As a final note malrotation affects 1 in 500 people, it happens when the baby develops in the womb and never fixes itself. Symptoms of this condition are projectile vomiting in the first month and severe stomach pains. In the UK that means 100,000 people suffer from malrotation, obviously some people live a normal life with it left untreated. However Sarah has “classic” malrotation and this virtually never goes beyond one year before being diagnosed. Dr. Samuel does about one per month and he is just one of several surgeons who do this procedure. When Sarah was admitted they did three in one week.
Lyn and Dennis Staines