Many TOFS members will know that TOF/OA was first successfully treated in 1941 in the USA. In 1947 came the first successful TOF/OA surgery in Europe, at Hammersmith Hospital, London. Bridget Barson was that baby!
As Europe’s senior TOF, she is an active member of TOFS and here she reflects upon her life. !
At the last TOFS conference in October in Coventry I was persuaded to write something for Chew, as I had not submitted anything for ages. When I looked back, the last time an article about me had appeared in Chew was in the autumn of 2004 and that was a reprint of a paper published in the Nursing Times dated December 1947. In other words, 66 years have
elapsed since that paper was originally published. !
So after much procrastination, I thought I would share with you my reflections on how having been born with TOF has impacted on my life and how finding TOFS has been a salvation to the quality of my life – together with the invention of Omeprazole. !
I was born at St Helier Hospital in Carshalton and lived a few miles away at North Cheam until I was sixteen, when we moved to Mitcham. Originally, it was assumed that, because a successful join of the oesophagus had been achieved, all was well. Yes, many TOF babies grow up with no problems and the only reminder to their rocky start in life is a scar. !
As a baby, my mother had problems weaning me, because as a neonate, nasty medicines (not tasty food) had been given to me on a spoon. She had to deny me any milk until I took a spoon. I always had a poor appetite as a child and there were no nutritional supplements available in those days. !
I was always “chesty” and, on starting Infants school at five, caught everything going. I missed much early schooling. It was decided that physiotherapy would help – this involved being tipped upside down to clear the chest. This was not a good solution for someone whose chest problems were possibly caused by reflux! I would see a paediatrician about every six months, but what experience did he have of patients with TOF?
Anyhow, I survived and passed the 11+ and went to our local grammar school. Throughout these years I was often wheezy, particularly at night. Sadly, another blow struck just after my successful “O” levels, when I developed thyroid cancer. Looking back at the 1947 paper, I can see I was screened several times as a neonate with no-one realising that the thyroid is
susceptible to radiation. I now attend the Endocrine clinic annually after several years of getting repeat prescriptions and no blood tests! My bone density is not good having been on thyroxine for 50 years so I take oestrogen and vitamin D. !
However, I trained as a therapy radiographer and worked with the early bone marrow transplants. In 1970 Robert and I were married. Martyn arrived in January 1979 when I became a full-time mother as there were no part-time opportunities for work. Moira arrived in July 1982. The year before her birth was the only time I have been hospitalised with asthma during a period of high pollen and poor air quality. Since then I have been on a regular regime of inhalers and now only use Seretide daily with Ventolin occasionally. I also used to take Aminophylline to stop wheezing at night but since seeing Professor Morice I have been able to stop this drug.
One day I was reading a magazine and saw an article about TOFS. I showed it to my mother who encouraged me to write in response to the article. From that time I joined TOFS and can remember going to a TOFS conference in Sheffield during the 1990s. !
When the children reached school age, I started work again, this time in administration for our local Adult Education Service. Eventually I became a full-time worker and stayed there until I took redundancy during reorganisation. After a period temping, I eventually found a job as a secretary in the histopathology department at St George’s Hospital where I stayed until retirement at sixty. !
When Professor Morice spoke at the first Adult TOF conference in 2010, I had a eureka moment. Everything he spoke of was what I had been experiencing. I had been on 20mg of Omeprazole since 1999 with a two yearly endoscopic upper gastro-intestinal examination, but the heartburn was not controlled in certain situations and I was always clearing my throat. In May 2011, I saw Professor Morice who started me on a high dose of Omeprazole plus Ranitidine at night together now with Metoclopramide. The
improvement was fantastic. I remember having our dinner quite late one evening after an outing and expecting to wake up in the small hours with heartburn, but I slept all night. !
Life since retirement is busy. We go to a fitness class once a week and I go to Pilates which is good for my crooked back and helps with breathing. We are active members of our local Methodist church. We belong to the National Trust and also to our local branch of the Trust which has many outings and walks. Living here in Streatham in South London we have very good transport and are often in London, particularly at the British Museum, where we are members. We also travel abroad two or three times a year.
Recently we went to Israel, for example. !
Martyn lives near to us while our daughter lives in Hemel Hempstead but we see them regularly. !
In conclusion I thank God that I was born in the right place at the right time. My only brother is ten years older than me. My parents didn’t plan such a big gap between their children but the war intervened. If I had been born earlier, I would not have survived to be writing this article
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I am Shelda, a young married girl, the mother of a TOF/OA baby who I met just for three days. Ann-Kathleen my daughter’s name, born on the 4th February 2016 and died the 7th of February after her surgeon she couldn’t breathe. I feel so lost, it was the first time that my husband and I learned about this illness and only a week before she arrives. we reach we could do everything to keep her with us. I am so happy for you, having the opportunity to leave and lot of warmness in my heart to see how far you reach despite of all you go through. I did not realized that she could have a real life until I read you. I so want to elevate awareness about it in my country, I hope I will reach my community.
with all my love
Shelda
I am a mother of a 20 yr old who was born with ToF repaired day of birth. He has now had 3 fundoplications but reflux and difficulty swallowing is always a problem. What is so sad is when he was born I was told the hospital had not had a TOF child for over 5 yrs so there were no existing services. Although we have had some fantastic doctors it is always difficult as generally we are told our son is the oldest TOF they treated. It was great to read your article. Thank you for sharing life as an adult with TOF repair.
This is so interesting. I was always told that I was the first baby to survive this operation. I was born on 10th January 1947 at Queen Charlotte’s Hospital in London and was operated on by Mr Hanson at five days old at Hammersmith Hospital. I remember going up to the hospital when I was about 12 years to be shown off to a large audience of doctors. I still have a photo taken at the occasion. I am now 73 years old and would love to know whether or not I was really the first.
I can confirm that you were indeed the first successfully operated in Europe Jenifer. Records show that you were born 10th Jan and operated 13th Jan. by Mr Dick Franklin.