Newborn with lymphoedema: Hi Everyone! First of all I'm... - LSN

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Newborn with lymphoedema

slavka profile image

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

39 Replies

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.

slavka profile image
slavka in reply to Lynora

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!

slavka profile image
slavka in reply to CCT67

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

slavka profile image
slavka in reply to ssc123

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

ssc123 profile image
ssc123 in reply to slavka

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

slavka profile image
slavka in reply to ssc123

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

ssc123 profile image
ssc123 in reply to slavka

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.

slavka profile image
slavka in reply to ssc123

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.

slavka profile image
slavka in reply to AnneBury

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 !!!

Lynora profile image
Lynora in reply to slavka

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?

slavka profile image
slavka in reply to Lynora

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.

slavka profile image
slavka in reply to alison16

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

slavka profile image
slavka in reply to alfie19

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

alfie19 profile image
alfie19 in reply to slavka

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

Hi slavka I’m now 23 and I was born with left leg primary Lymphoedema, after being with my partner for 6 years I recently decided to go and see a geneticist to see if my Lymphoedema could be passed on to my own children, unfortunately it was confirmed I have the VEG F3 gene which means if I have children it’s a 50/50 chance per child that they will also have it, this is the latest I have heard and I am awaiting to see the genetics to discuss this, with your son 100% stick with the compression stockings and if bandaging is offered when he’s older definitely go for it, as a child I didn’t stand the tight stockings or bandaging very well and would often get upset and not want to wear them but my mom persisted, without this early on treatment my Lymphoedema could be so much worse now, it’s important to moisturise the foot and leg everyday to keep the skin in good condition to prevent any infection as this can cause complications and one of the best treatments is manual lymph drainage once referred to a Lymphoedema nurse they will teach you how to do this for him, unfortunately at the moment Lymphoedema is something for life but if the condition is well managed your son will be able to grow up and do what all the other kids are doing, the only time it’s stopped me is in my career path, I trained to be a nurse but unfortunately the long shifts on my feet worsened my Lymphoedema but apart from that I’ve had a life quality like everyone else 🙂 i hope this helps x

It could be Milroy's Diease. If so it is genetic and causes lymphodema, can be in legs ( most often) or arms and males with it sometimes have hydrocells in bag of privates. surgery takes care of that completely and no problems having chilren . it is a disease of the lymphatic system didderent degrees of problems. massage when you especiallt hep this, always massage up on legs never down. I hope this is not it, it is rare but in my family familiar

Hello, our daughter was diagnosed with probable Lymphedema already at her 20 week scan, she's now three months and we have an appointment at st georges this month. Like you, we'd love to get in touch with other families with a child with lymphedma, we're trying to do the LD massage morning and evening but would be so greatfull for advice /tips on how best to manage the condition. ( ps wierdly our user names are almost the same! I say wierd because I did contact another family whose daughter had almost the same name as ours too) in anycase would be great to hear back from you!

slavka profile image
slavka in reply to sklava

Hey sklava. When I first saw your username I thought someone is trying to prank me. I've done the journey you are about to do so can share lots of tips. Any chance to find you on Facebook or WhatsApp so we can use messanger to communicate? I can video call you if you wish.

St Georges is the best place for your daughter. Mark with Dr Gordon and their team will look after your family and you will never feel left alone with Lymphoedema

Hello

I hope your baby is healthy and happy!!!

I am mam of two beautiful boys and unfortunately my second son maybe has lymphoedema on his left arm now he is 7months and we are trying to have a diagnosis please could you please help me because in my country no one have ever treat this disease in this age what did you do to have the diagnosis? Can you explain me this massage you do for this disease? Is somewhere in the world experts for premier lymphoedema in newborn? Please I need your help because here no one can tell us something specific

How is baby's life? Is it difficult? Does baby have pain?

I am so sad!!!

I will appreciate your help!!

slavka profile image
slavka in reply to Stevation

Hi Stevation

I know how overwhelming this can be, especially when you see your own child being affected. My "newborn" is 3.5 years old now and please believe me, lymphoedema is not end of the world even if it may feel like it on the beginning of your journey.

My son Anthony is being cared by one of the best lymphoedema teams in the world so I consider ourselves very lucky. We had been referred to St George's Hospital Lymphoedema clinic when my little one had bacterial meningitis at the age of 4 weeks. Anthony was very poorly and got attention of many doctors in the hospital. Someone finally came up with the idea of lymphoedema so when he got better we paid a visit to St George's.

I honestly dont know what chances you have to get a visit in specialist clinic but its worth every penny. With good team your baby can get confirmation if in fact she/he has lymphoedema. If that would be the case then you will be shown how to look after your baby and what to do to manage his/her condition.

My boy is full of energy normal child enjoying his life to the fullest. If managed properly, Lymphoedema can be just an annoying condition where you have to be careful not to hurt affected limb. Daily routine like wrapping, compression garments and great skin care is a must but after short time you all get use to it and it just becomes a normal part of your life - same as tooth brushing.

Please dont be scared, your child will be absolutely fine but you need to find a way to get to lymphoedema clinic or at least good lymphoedema therapist.

Are you willing to travel to another country if there is absolutely no medical help in yours? I'm sure some people here can help with great ideas where to start.

Please stay positive, everything will be ok.

Stevation profile image
Stevation in reply to slavka

Thank you so much for your answer

Could you please informe which tests did you do in order to have a specific answer about the disease? Is this getting bigger as the child growing up? Does the baby hurts? Do you have a physiotherapist? What doctors is in the team who treat your baby?

slavka profile image
slavka in reply to Stevation

Anthony had been assessed by St George's team and it was confirmed he has lymphoedema before any genetic test was done. For a specialist it's pretty easy to recognize LE. Some time later he had genetic test but it all came clear, which means we are possibly dealing with WILD syndrome in this case. My boy is being looked after by:Professor Sahar Mansour

Dr Kristiana Gordon

Professor Peter Mortimer

We also have this absolutely fantastic physiotherapist Mark Parsons

That's like best of the best team! World league champions!! They all always go extra mile to help us. Anthony has few other health issues and all of them were discovered by St George's team.

I am sorry but I cannot tell you what exactly will happen as your baby grows - it depends on many factors like possible vascular issues, lymphoedema management etc.

In our case Anthony's leg is much better that it was on the beginning. As child gets older muscles are being used constantly which helps to push lymphatic fluid. We are also very strict with garments and wrapping. It is absolutely possible to manage lymphoedema at home with great results but on the beginning you need a great guidance to direct you the right way. A specialist who will hold your hand and take you through the start which often can be overwhelming. I cannot thank St George's team enough, thanks to their hard work my son is having normal life and I know it wouldn't be possible without them.

Feel free to ask any questions, if I know the answer I will try to help :*

Stevation profile image
Stevation in reply to slavka

Hello again!!! Thank you so much for your help!!! By the way my first son has the same name with yours!!!

I would like to ask you if you have ever ask specialists about surgery!!! I have heard for 3 types of surgery and i would like to know if anyone did and has good results!!!

Iam interested in hearing the opinion of your team at St George's. I have a hope that we can help our baby with surgery but i am not sure . Here in Greece noone would like to take the responsibility to do the specific test in order to have diagnosis because as they say the dont have experience and they dont have good statistics about this test in this age!!!

To be honest i am in panic ... I cannot realize even now how this happened!!! I am desperate if i can do the right thing for my son will he ever has a normal life??? Does this effect him in his personal life??? I am so anxious and so confused because here we dont have specialist with experience ar these ages and i feel that they act like they do an experiment on my son!!!!

Stevation profile image
Stevation in reply to slavka

Also i would like to ask you in which age did your son put compression? And can you tell me the company which make so small compression? Because here in greece they dont know in which age we have yo start wearing it and which company can help us...thank you very much for your help!!

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