Torben Clark
We are trying to raise enough money to take Torben to Cincinnati Childrens Hospital to attend a bowel management programme.
Otago
Torben is our lovely three and a half year old boy who was born with VACTER association. VATER association is defined by the presence of at least three of the following congenital malformations (or birth defects): vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies. Torben has vertebral defects, anal atresia & renal anomalies.
Torben has already endured a total of 12 operations since he was a newborn and, unfortunately, is still incontinent. This is starting to have more of an impact on his life as all of the other children his age are toilet trained and he is still in nappies, needing to be changed 6-8 times a day.
Due to the rare nature of his condition we are struggling to get the support we need in New Zealand to get him socially continent before he starts school in 2018. We are desperate to have this element of his life sorted before he starts school.
Our goal is to raise enough money to take Torben to Cincinnati Children's Hospital in the United States, to attend their Bowel Management Programme. This is a specialist centre for children with fecal incontinence and anorectal malformations.
The Bowel Management Programme is a one-week outpatient programme for children who are unable to anticipate or control their bowel activity. Each year about 250 children from all over the world attend, and what we’ve been told is that many of the children are in normal underwear by the end of the week. We are hopeful that the programme will improve Torben's self-esteem and quality of life as he grows and starts to attend primary school.
You can read more about this amazing programme here:
https://www.cincinnatichildrens.org/service/c/colorectal/treatments/bowel-management
We are waiting on a quote from the hospital at the moment and hope to have a better idea of cost soon.
Nina Clark's involvement (page creator)
I am Torbens mum.
Use of funds
Funds will be used to pay for Torben to attend the bowel management programme and for flights to the USA.
Latest update
We Made It Home 30 August 2017
Hi Everyone,
We made it home!
Cincinnati Children's Hospital was amazing. Both the doctor (Jason Frischer) and nurse (Monica Holder) were very experienced, kind and helpful. They assessed Torben and taught us how to do daily enemas on him. Each day we adjusted the enema solution and they would x-ray him to see if he was emptying properly with the aim being to keep him clean of stool for 24hours. He is still having a few accidents so he is in nappies at the moment but this is a HUGE improvement on the constant soiling we were dealing with before we left. The best thing about doing the Bowel Management Programme is that we are now patients for life so we have the support of a great team over there when ever we need it.
As mentioned in earlier updates they thought that Torben may need more surgery to re make his anus. After assessing him they told us his anus is still not as big as it needs to be so he will need it redone. This was difficult to hear as we have been flying up to Christchurch every month for the last year to have his anus dilated under general anesthetic to try to avoid having to have it re done. Anyway, both the surgeon there and our surgeon here are going to talk and discuss a long term plan for Torben.
Also, the urology testing that was done over there revealed that his bladder is larger than normal and not emptying properly. We knew that this was a possibility as it is quite common for children with anorectal malformations. It was still very hard to hear that we will have to deal with possible urinary incontinence also.
So even though we had so news that wasnt great at least now we know and can keep on moving forward.
Thank you all so so much for your support to get us there. It has already made a huge difference to his life.
I will endevour to keep up with the updates as this journey continues.
Love the Clarks x
Latest donations
Thanks so much Elisabet x
Thank you so much, Daniele. You are too kind xo
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