OT: My younger daughter - Intestinal Lymphangiectasia

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I don't normally post family pictures here (or anywhere else on the internet), but I think that these two will be okay since they're already posted elsewhere. These are two pictures of my younger daughter Isla. The first is when she was about six months and in hospital (more on that later) and the second is from last week.

Isla was born with a very rare condition called Intestinal Lymphangiectasia. We reckon that about 1 in 500,000 people have this condition. In simple terms, the patient's lymphatic system doesn't flow fast enough around the gut to allow effective fat transfer. The upshot of this is that the fat builds up and eventually there is a rupture which allows the fluid from the lymphatic system to flow back into the gut. Unfortunately, this fluid contains lots of essential things (proteins, immunoglobulins etc.) and results in the patient becoming very poorly.

There is no way to pre-diagnose this condition. Isla was very, very lucky to have an extreme case very early in life (about 10 weeks) and to be taken to a hospital where the consultant had seen the condition before. Resulting in a very quick diagnosis, though it was touch and go and she spent a week in Intensive Care.

Isla had a setback a few weeks after being discharged from hospital when (without anyone realising) she contracted a gastro virus which she couldn't get rid off and which had the same symptoms as her condition. This resulted in a month long stay in hospital with Isla being fed through tubes as well as receiving constant infusions of various things that she was missing.

Amazingly, she made a complete recovery and is now very healthy. She will always be on a low fat diet and will probably always need supplements but we thank God every day for the help that he gave (lots of people spent a lot of time praying for Isla).

We have set up a website to offer some information for patients and their carers (there was nothing when Isla was diagnosed, which added to the horror of the situation) and to hopefully allow people to get in contact with others who are affected. The URL is http://www.primary-il.org.uk. We're hoping to create more awareness of this condition because we are acutely aware that if we hadn't been lucky with the doctors who saw Isla this might have been a very different story.

Here are the pictures (thanks for making it this far:smile:):

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Andy
 
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Glad your daughter is doing well better now. This is a great use of the Cafe, never know when someone is looking for such information. I posted 2 years ago looking for medical help for my wife, and found it here on the cafe. Hope your daughter continues to improve.
 

LyndeeLoo

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What an absolute beauty she is!! :biggrin:

I'm so glad to hear she's doing better. She and the rest of your family will be in my thoughts and prayers...
 
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Andy, what a beautiful joyful 'miracle daughter' you have!
Kudos to you and yours for setting up the wonderful, inspirational, helpful and thorough website to help others face and deal with this rare condition.
Thank you for sharing Isla's story. It lifted my heart to read your/her story, and to see such a joyful precious child!
Thanks for your kind reply.

Isla's mum has to take all of the credit for the thoroughness of the website - one of the many blessings that we have been given is that my wife has a doctorate in Biochemistry, so she understands the detail of Isla's condition at a level that I can only dream of.

She has also ensured that Isla's diet is as healthy and balanced as possible, although very, very low fat.

A final blessing is that Isla was very ill, very early in life. This lead to her being sent to hospital where a consultant who already had a patient with this condition worked. This resulted in her getting a very quick diagnosis, before she suffered too much intestinal damage - some patients can go for months and even years without getting a diagnosis - which leads to secondary conditions such as lung disease (due to being immuno-compromised). All in all, I think that Isla is one of the luckiest girls in the world.

Our thoughts are that we should try to raise awareness of this condition so that anyone suffering from it in future can have the shortest time to diagnosis and have the best chance of having a more normal life.

Andy
 
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Thanks for all of your kind comments.

Isla really is a sweetie (even when waking us up at 3 in the morning) though having reddish hair seems to have made her "fiery" and she is definitely the boss of the house.

Andy
 
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She is precious, thanks for sharing the story! Glad she's done so well, and was so well cared for!

Doug
 
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Just a quick update, as it has been a little while since I posted about this.

Isla is now 6 and is leading a completely normal life.

She has been off supplements for about two years (her vitamin levels got too high o_O so they asked us to stop giving her supplements) and eats a pretty normal diet - against any expectation from the doctors. We keep a bit of an eye on her diet, but really she eats anything she wants - the only restriction is at school, where they limit her choices from the normal school dinner menu.

She's bright, bubbly and full of energy and lights up any room that she goes into.

I was reminded to post because she has her annual check up tomorrow (though it has been nearly eighteen months since her last one) and she's very excited about seeing her doctors and having her blood tested.
 
Joined
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Beautiful young daughter. Glad she's better now.
Also -- thank you for helping set up informative forum/websites for other worried, confused parents when it's their child afflicted.
 

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