Newborn with lymphoedema

Newborn with lymphoedema

Hi Everyone!

First of all I'm really surprised there is so many people with that condition. I've never heard about lymphoedema until my son was born.

There was no complications during pregnancy, everything was normal and perfectly fine. My little one was born at 6pm and looked very healthy. 6 hours later his left leg has started swelling slowly. I thought it was because of name tag being too tight so I removed and hoped for swelling to disappear (see picture)

Few hours later his entire left side got badly swollen including face, hand and testicle. So many doctors came to check him out but no one could say what's happening. For some reason his swelling has cleared from other areas except the left leg.

Long story short: my son is 5 mths old now, had meningitis when he was 4 weeks old, had million scans done to his leg, brain, kidneys, groin etc.

We are under St. George's Hospital and Dr Mansour will be looking after him. We've met Mark (absolutely fantastic man!) who organised compression stocking for us.

My son had a blood taken for some genetic tests but we haven't heard anything yet and it's been over 4 months already. He will be having MRI in 2nd of January. How does it look like? What can we expect? I believe they will have to use an anaesthetic?

Has any of you ever heard any stories about newborns with lymphoedema? Because everywhere we go doctors say it's a first time they see such a young person with that condition.

I would love to meet up with anyone to have a chat so you can tell me what to expect and how to make it easier for my son. I'm terrified about how his life is going to look like. His leg is massive compare to the other one despite him wearing comp. stockings and me doing the massage

29 Replies

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  • Call the LSN helpline 020 7351 4480 open 10-4 Monday to Friday and ask them to put you in touch with Denise Hardy - she is a nurse practitioner (and LSN Advisor) and has a lot of experience with children born with lymphoedema. She is also involved with families who have children with the condition.

  • Thank you so much! I will give them a call

  • Arr poor little boy, bless him. Hope you get some answers and get something sorted for him. Keep us posted, it’s bad enough for adults to have never mind baby’s.

  • Do not worry I was a new born child with lymphoedema in the 1980s when certain gene mutations had not been discovered. No one could explain what I had. It was only diagnosed when I was 13. I was then operated on but today we know that was unnecessary.

    If you are at st george’s Then ask to see Dr Grant in dermatology.

    Knowing what gene mutation your child has is very important a so,you are doing all the right things.

    Life has been great and lymphoedema has not stopped me doing anything.

  • Thank you for your kind words

  • Hi Slavka you are not alone there are parents with little ones who have Lymphoedema. You will get some responses from parents here and if you are on Face Book there are support groups for parents which are full of information - search Lymphedema and parents (spell it without the o as Americans leave it out). You are in excellent hands at St Georges!

  • Thank you so much! I'm going to check that group right now

  • Hi Slavka,

    You are most definitely not alone. I have two children with primary lymphoedema. Both of mine were diagnosed with fetal hydrops at birth and both were very swollen. My daughter had infusions to remove the fluid and left hospital without any swelling. My son was left and I was told he was just a very big baby. This wasn't linked to lymphoedema until some years later. So it's good that the doctors have a good understanding for your little ones condition so early.

    Life for both of my children (now 10 and 13 years) is great and genuinely happy. They need to take some extra precautions when doing high risk activities but this has become normal so they have not been held back from doing anything.

    St George's have provided great care and advice for us. Don't worry about the delay in hearing regarding the genetic test. These things are not always straightforward but St George's are determined to find the genes and keep plodding on. They usually update us at our yearly appointments.

    There is a great meeting that happens every two years called lymphaletics. The next one is September 2018. It's a fun day for children across the country with lymphoedema. They put on lots of fun activities for the children and really spoil them and there are sessions for parents to help with advice from other parents, children and doctors. There are also companies there showing all the products available for lymphoedema. But the best thing is just chatting to other parents and realising you are not alone. Gillian Craig organises it (gilliancraig@nhs.net) and I would definitely recommend contacting her.

    Best Wishes

  • Wow that's some great news for us. Do you know where the next one will be taking place?

  • Yes the next one is 2018 and they are usually a Saturday in September.

  • Thank you. Does it take place in one city at one specific place?

  • They try to make it centralish so that people from Scotland to Cornwall can attend. The last one was in Sheffield. That was the first one we attended but I think previous ones were also near Sheffield. Definitely worth the journey though, they really put a lot of effort into the day.

  • I will contact Gillian and we will definitely come. Hope to see you there :)

  • My mother is still worrying about me and my lymphoedema. I have had it since I was 11 years old and I am now 62 and she is 87. You will be getting great treatment at St George's. As Elena123 says, life has been great and lymphoedema has not stopped me doing anything. Having said that when I was at school and I didn't want to do PE/ games I used to say my leg hurt so I couldn't. It didn't but no-one could argue with me.

  • Hahaha clever girl ;)

  • OMG I'm so happy to see all these replies! All of you are fantastic! Thank you for giving me a hope for a normal life to my son. Until now I felt left alone with the problem but you guys showed me that there's so many people happy to help.

    Just one more question: my son doesn't walk or crawl yet due to his young age. I do SLD together with lots of leg movement and exercising. After that I see huge improvement and can tell his leg is much much smaller. But then when night comes I have to remove his compression stocking otherwise he cannot sleep and cries alot. Next day early morning his leg is massive and hard again. I feel like whatever we achieve during day time is wasted because of the night without stocking. There is no point to elevate his leg at night - he is just 5 months old. How do you deal with night? Any ideas what we can do to keep the swelling at minimum level at all times?

    Thank you all !!!

  • Talk to the team at St Georges. It is better that he is able to get quality sleep - if he were in garments overnight at his age it could cause anxiety. Are you able to incorporate SLD and passive exercise into the morning routine - then put the garments on before normal daily activity? Do you incorporate lots of abdominal massage into the SLD?

  • We do SLD and exercises both morning and evening time.

    I do just a little bit of abdominal massage before I start with his leg. From what you wrote I can see that's not good enough. Can you please tell me the best way to do it???

  • Hi Slavka. Sounds like your routine is great - with the abdominal massage, do it both at beginning of routine (to clear the abdominal nodes) and at the end of the routine (to help clear and flush the nodes/thoracic duct again). Hope that's not too technical! There is also a night garment but your son may be too young to wear it. I haven't worked with kids/babies. There is also a Facebook group for parents with kids with lymphoedema - I'll look up the link.

  • You are a star! I will start with your technic today evening.

    It's not always that simple as infants sometimes get annoyed and don't want to complete their routines :////

  • Facebook group: Lymphedema Kids

  • I'm so sorry to hear this, and very surprised too! Like you, I'd never heard of this condition, until I was diagnosed as being a sufferer at the beginning of this year. It seems us Lymphies are in a group which doesn't seem to get any airtime at all, and this is a horrendous state of affairs! I can only assume that it's because it's not considered 'life threatening', although the physical and mental effects on us, and the complications which can arise from it can be - if not directly - then indirectly responsible for our demise at a much earlier date?

    It seems we are a much bigger group than it would first appear, and far more research needs to be done to a.) eradicate the root of the problem and b.) improve the quality of life for us sufferers?

    God bless you and your little one, who will have a difficult path in life.. xx

  • My son was born with Lymphoedema, he is also a patient at St George’s hospital, you are definitely not alone.

    When my son was born his arm was swollen and purple and was whisked off for tests, at first they thought the cord had been wrapped around his arm in the womb and even ruled out a heart problem.

    My son had a mri scan, they will give your son an anaesthetic but it’s to keep him still while they do the scan, he will be fine and back to you soon after.

  • Can you tell me just few things? What are they looking for with MRI? Arr there any side effects of anaesthetic that I need to be prepared for? Can we be present during MRI? Is he going to be discharged from hospital straight away after MRI or do we have to stay there for couple of hours?

  • Did or does anyone else in the family past or pesent have swollen limbs as in my case I was told it was genetic in the genes but having an operation in the limb made the swelling worse

  • That is a bit complicated, I don't know my background and from my husband's family there were no problems with LE. So if that's the case here it would be most likely my "faulty" genes I believe.

    We have also 3yo son who is perfectly healthy so far - I really don't know what to think

  • I was told it can miss several generations both my grandmothers had problems with their legs mine is the feet ankles and legs and groin areas but my brother is ok hope the Drs get your son sorted soon he will probably have to wear compression garments for the rest of his life blessings to you all

  • Poor boy... Dr Mansour is brilliant - our Dr for all 4 pregnancies, losing 3 to arpkd/CHf... I have lympadema due to cellulitis past 11 years... Good luck x

  • Omg sweetie you sound how I felt. I’m happy to chat. I had no one and felt so alone but my son is two in January and I have learnt more than Doctors x

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