Holt-Oram

For people affected by HOS

A site for people who have or have an interest in HOS.

Latest Activity

Paul Hammond commented on Paul Hammond's blog post intro
"He has abnormal shoulders (not sure about dislocated) which he seems to just get on with. His arms are thinner than normal, I guess he maybe missing muscles. He did suffer with it when he was younger, as when he tripped and fell, he lacked the…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"I was also worried that I'd struggle to hold the baby in the bath and wash him or her but then I found this, a bath support from Mothercare http://www.mothercare.com/Mothercare-Ergonomic-Bath-Support/265758,default,pd.html"
May 4
Becca Evans commented on Paul Hammond's blog post intro
"Hi Paul, It's interesting that you've been told that HOS weakens as you go down the generations. I've been told the opposite and I've also been told that there's no pattern! I don't mind you asking at all. Both my arms…"
May 4
Paul Hammond commented on Paul Hammond's blog post intro
"Thanks Becca. I wasn't too much of a surprise to find he had heart issues, as I had similar problems from birth. But I was a shock when he was born without a thumb. When we were told about Holt-Oram, there was no need for blood tests to see…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"The bath was another item that was worrying me. We have quite a small bathroom, I couldn't work out how I would lean over the bath to wash the baby or lift a baby bath to fill and empty it. Then I found someone selling one of these second hand!…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"After some thought I decided I wanted to co-sleep. There's a chance I'll need a caesarean and if I do I think getting out of bed for night feeds would be really hard. I was really worried about just having baby in bed with me though. Then…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"Now, where to start with car seats? I feel like I tried every car seat in Devon and Cornwall! The clips are so hard, I understand from a safety point of view that they need to be so that children can't get out while the car is moving but this…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"The pram is something that was beginning to worry me. I knew I'd find it hard to manage one so I started looking early. I went into Mothercare to look and the sales assistant was amazing. She really listened to what I needed and knew the stock…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"Hatley also do a range of zip up babygrows. They're all quite gender specific though so I guess I'll have to wait and see whether Lentil is a girl or a boy before I buy any of those!…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"This next one looks amazing and I would love to get my hands on some to try so I could tell you if they are as brilliant as they look! It's from a company called Magnificent Baby and it does up using magnets! The only drawback that I can see is…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"I've also just discovered this cute little zip up romper from Boden, http://www.boden.co.uk/en-GB/Baby-0-3yrs-Rompers-Play-Sets/Rompers/70069/Baby-0-3yrs-Zip-up-All-in-one.html?NavGroupID=188 I also managed to find one on their eBay outlet…"
May 4
Becca Evans replied to Becca Evans's discussion Baby items for the thumbless
"Gap has quite a selection of babygrows with zips, I've ordered quite a few of these already and will let you know how I get on with them. I couldn't resist the cute…"
May 4
Becca Evans posted a discussion

Baby items for the thumbless

So, now that I'm 33 weeks pregnant I find myself looking at baby things a lot! I'm discovering how much stuff is made specifically with thumbs in mind but I'm also realising that people with thumbs struggle too! So many things are fiddly or badly thought out! So I thought I'd write about the things I've found which offer alternatives and hopefully slightly easier options! Feel free to add anything you've found to be useful!I'm going to start with babygrows because they are so fiddly! I don't…See More
May 4
Profile IconAmy and Vanity joined Holt-Oram
May 4
Becca Evans commented on Paul Hammond's blog post intro
"Hi Paul, It can come as a bit of a shock when you find out that way! You're not the first person I've heard of who only found out when they had children. It's nice to hear from you, I always like it when a new member introduces…"
May 4
Paul Hammond posted a blog post

intro

Hi people, I am brand new to this site so would like to say hello. I am 33 and have Holt-oram, however I have only known for the last 7 years, this is due to my son being born with the disorder. Unfortunately he has suffered from it more than I have. He was born without a thumb on his left hand and a small thumb on his right. He has disfigured shoulders and had hole in his heart. Since his birth the poor little man has been through surgeries on his hands (by a very good plastic surgeon at…See More
Apr 21

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What is Holt-Oram syndrome?

Also known as heart-hand syndrome this condition has a lot of different permutations. People with HOS often have upper limb growth abnormalities which can range from being very minor to having parts of arms / fingers / thumbs missing. Often the collar bone is also quite small. In about 75% of cases the heart is also affected, this can be in a variety of ways, ranging from normal function to VSD / ASD, conduction disorders, holes in the heart etc.
Holt-Oram is listed as a rare disease and is estimated to affect 1 in 100000 individuals. HOS is caused by a mutation of the TBX5 gene, this mutation can occur in people with no history of the mutation in their family. HOS is an autosomal dominant disorder which means that only one copy of the mutated gene needs to be passed on in order for a child to inherit the condition, this makes it a 50% chance that the condition will be passed on to children.

This information has not been put together by a health professional, this is simply my understanding of the condition I have. If you feel that there are mistakes in what I have written please let me know and if you want more detailed information please see one of the links.

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Baby items for the thumbless 9 Replies

Started by Becca Evans. Last reply by Becca Evans May 4.

Hey :) 1 Reply

Started by Rhiannon Lucas. Last reply by Becca Evans Apr 20.

Membership to the site 25 Replies

Started by Becca Evans. Last reply by Becca Evans Nov 21, 2014.

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