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Women's Health: Postpartum Community
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Lymphangioma in Infants

My 4 month old has yet to be diagnosed with Lymphnagioma, but that is what the pediatric surgeon is lean towards. Can anyone tell me about what exactly I'm about to deal with? Especially if surgery should become involved. Thank you!
58 Responses
Avatar universal
Hi Nikstar,
I live in Melbourne Australia and have a daughter with lymphangioma of her right arm.  She had many surgeries as a baby when she lived in an orphanage in Thailand.  She is 10 years old now and doing well, she occasionally has bleeding into the tissue but no infections so far.  She will need further surgery which we hope will not cause loss of function in her arm.  Please let me know if you would like to chat further as we are a rare breed in Aus!
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My 31 year old daughter has been diagnosed with lymphangioma in the retro peritoneum.
Can anyone help us to locate an expert to consult - hopefully in Australia !
Is there anyone else out there sharing this condition whom she could contact?
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I am 34 weeks pregnant now and my fetus was diagnosed with left thigh, cutaneous and subcutaneous abdomen, and kidney just like yours... I understand what your going thru and I just praying my baby does well.
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My daughter was diagnosed with lymphangioma 18 months ago, on hewr neck.  She has ok432 treatmnet and so far successful, her lump keeps coming up and down at the moment and is sometimes very painful.  She is 13 years old and is now monitored every 3 months to see what it is going to keep doing.  Would love to chat to someone dealing with same things.  We live in New Zealand
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My son is 13 months and he has a lymphangioma in his left eye socket.  He does not have an eye ball in that socket.  The orbital plastic surgeon has never seen this in a child so young and without an eye ball.  The upper lid is so swollen that the inside of the lid is exposed to the elements.  He has already been treated with oral antibiotics twice in less than 6 weeks.  We are going to see the Vascular Surgeons this week.  Hopefully they can do something for my son's eye.
Avatar universal
My five year old daughter was diagnosed with a macrocystic lymphangioma in 2007. One day she had a slight cold the next she had a knot the size of a golf ball coming out of her neck just below her right ear. I immediately took her to the ENT and the doctor said he never saw anything like this before and referred us to his colleague in his office who was wonderful.  He knew exactly what it was on sight and was experienced in OK-432. We were referred to The Children's Hospital of the King's Daughters in Norfolk, VA with Dr. Craig S. Derkay. She was eligible for the study to recieve the injections. Due to constant prayer, by the time the appointment was made the swelling had decreased.  We went to Virginia to see Dr. Derkay and made a summer vacation out of the visit. Fortunately she did not need the shot and we returned home.

We monitor her constantely.  She is now five and will start Kindergarten in the fall.  She had a cold a few weeks ago and the swelling is back but never as large as the original golf ball. We will consult with a new ENT within the week, we moved to another state and are awaiting the name of someone here who is knowledgable of her condition.
Avatar universal
My baby is now 10 days old and after all the bad news I was given he was born without any complications, he has swelling on the left side and a PWS but did not need to go to the NICU and all his organs are doing perfect so far. We do have to go into the vascular clinic but right now I am happy I did not terminate the pregnancy... he is a beautiful baby...
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My son has a large multiloculated cystic mass and it is occupying the pelvis and most of the abdominal cavity.in 2009 it measured12.4 +12.+.8in cm in diameter and he was only 7yrs old.His kidneys are displaced by the mass and the bladder cannot be identified separatly to the mass.i am looking at trying to set some kind off help group up internet bassed and hopfully in the futuresome charity work due to there not being enough knowledge out the ie my docter is not up to date with the condition witch leads me into having to take a trip to my local hospital sometimes to make sure evey thing is ok if anyone fancys a chat my e-mail is michelle_shorthouse***@****
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Hi, my 18 year old daughter has just been diagnosed with retrorectal lymphangioma. Have you got any further with help for your daughter. What type of treatment are her doctors suggesting?

From Elizabeth7272
Avatar universal
Hi,

What country do you live in? Has your son received any treatment for the lymphangioma? My daughter has a fairly large lymphangioma in the retrorectal space. At the moment it is just being monitored, but I am worried that something should be done to remove or treat it.
1693851 tn?1306286568
My son was born with a medium size lymphangioma above his eye/brow.  They operated on him at the age of about ten months. (Which was a good age because he was strong but, still very baby-ish - easy to pacify.  We had patched his good eye as much as possible, as his other eye was badly occluded.

The operatation took around 8 hrs, and all the doctors involved looked shattered, he lost his brow muscle, but luckily his facial nerves seem unaffected.  If you don't know - Lymphangioma have a nasty way of affecting the area they surround like a tree grows roots.  We were told after his first MRI that the Lymphangioma did go back towards his optic nerve, and that they would leave this untouched, but remove as much as possible to free the vision of his eye.  

The operation went very well by all accounts, what was to follow was a (bit of) nightmere. They opened above his hair line and thru his eye lid, but after the op his skin refused to bond back down, it would fill with fluid, preventing the skin layers bonding, add to that all that was removed and we were fighting a losing battle.  They put a drain in for a week, removed it and the fluid came back.  Taking measurements of the fluid coming from his head was more than a little stressfull.  1 week with the drain in, 1 week with a pressure patch covering the whole area, then un wrap and the fluid just filled back up and his little face would swell!! another op to reinsert the drain and back to square 1.  This went on for weeks- months.  We decided to fly home with the drain in, after insisting to the doctor we would be ok monitoring it.  Our local Dr's unwittingly broke the cycle... They agreed that the drain should stay IN dispite the risk of infection.  We had a couple of good weeks without trouble then we were ordered by the surgeons to remove the drain, our local ENT removed it and we pressure patched as usual (a little too tight).  Two days we decided to check the dressing, to our horror we found a patch of necrousis, and it begain to swell instantly... this was on his first birthday.  His temp shot thru the roof, over a hundred, and an infection set it.  We rush back to the hospital, in I.C.U hes was put on I.V antibotics (again).  This turned out to be a blessing (kinda) as with all the extra white blood vessels his little body went into over drive and finally start to bond, (regardless of the big black patch in the middle - this is still scarring but he's young.  His eyelid is swollen a little, more sometime when he's ill or teething... but i really worried about whats going on behind, and how well his eye is doing...
I read on here, all you can do is give your kid as much love as possible... good advice, do that and hope for the best.  I could always be worse, and to those who are at the worst, there are friends, family and neighbours that are there for you.... and many strangers like me, i'm sure.  Enjoy your kids, and try to enjoy your time, as best you can.
Avatar universal
My son was diagnosed with Lyphangioma on his penis at one month old. We live near Vanderbilt University Hospital. He has a dermatologist there. He s now 14 and theyre bleeding, getting much worse. The last time I spoke to the doc he didnt want to do surgery. However, Ive read of 13 case studies and the surgery worked in that area. Does anyone know of a different doc or treatment that Im in the dark about?
Avatar universal
I have a 9 month old twin daughter that was born with a very large area of Lymphangioma to her neck area from ears around down to about chest area, and has had 3 surgeries, and more than 10 Sclerotherapies, has been hospitalized the first few months of her life and home at that time for very shirt periods, after the first 3 weeks. As she get older the stays are less except with the procedures every 6 weeks, the worse part about that is that she has to be intubated ( tube down throat to keep airway open, and put to sleep) for MRI guided Sclerotherapy. Anyone with questions, or similar experiences, see my blog at Lymphangiomafamilysupport.blogspot
Avatar universal
Hi,
I have a three year old with a lymphangioma sounding much like your little girl, only the left arm. I am interested to hear the type of surgery she had when she was younger and whether it was beneficial. We have no surgeon in our state prepared to work on her, so hoping Sydney might be an option for us. Wondering if your little girl's lymphangioma is painful when it ruptures (bleeds into itself). We have frequent bouts every few months where it enlarges, hardens and is very painful sometimes for a couple of months then returns to a more 'spongy' less painful state in a continuous cycle.

Avatar universal
Hello, my twelve year old son was diagnosed with a lymphangioma a few months ago after living with a lump on the right side if his neck which started as the size of a pea behind his ear. It is now the size of a tennis ball and half of that growth literally happened two nights ago when he complained of pain and woke up with it twice the size. He was already a patient of Great Ormond Street Childrens Hospital following his diagnosis and they have now decided to take it out with surgery. They have explained the risk of nerve damage etc but failed to explain what the risks are with him having an infection which is what they think induced the acute growth. No one else I know has ever heard of my sons condition and I cant seem to find any support here in the UK. It would be good to talk to others who have or are experiencing the same thing as my son and I. Please feel free to email me at ***@****
Avatar universal
Hello, my twelve year old son was diagnosed with a lymphangioma a few months ago after living with a lump on the right side if his neck which started as the size of a pea behind his ear. It is now the size of a tennis ball and half of that growth literally happened two nights ago when he complained of pain and woke up with it twice the size. He was already a patient of Great Ormond Street Childrens Hospital following his diagnosis and they have now decided to take it out with surgery. They have explained the risk of nerve damage etc but failed to explain what the risks are with him having an infection which is what they think induced the acute growth. No one else I know has ever heard of my sons condition and I cant seem to find any support here in the UK. It would be good to talk to others who have or are experiencing the same thing as my son and I. Please feel free to email me at ***@****
Avatar universal
Olá,
Somos portugueses também e está-nos a acontecer um caso semelhante. Faltam 2 semanas para o parto e apenas foi detectado o linfangioma á semana 32. É enorme, vai desde a órbita direita até ao queixo, passando pelo lábio superior. Se for possível, agradeciamos a partilha de alguma informação útil. Somos do Porto, os médicos mostram-se algo passivos, nós estamos aterrorizados.
Os nossos contactos: telmo.ferreira.***@****  ;  gorete.***@****.

Obrigado
Avatar universal
My daughter was diagnosed with Cystic lymphangioma at 6 months she has this on her left breast has anyone gone threw this with there baby she is now 17 months old and still has this please can anyone help thanks
Avatar universal
My son is two and half years old, diagnose with lymphangioma on his neck. It's getting bigger and there is hardening at one part. Dr advised for surgery. Can anyone please advise or share your experience how to manage the child during pre and post surgery? As a mother whom is pregnant for second child now really appreciate to get feedback on how to cope. Thanks
Avatar universal
my new born has been diagnosed with lymphangioma and he has it in his chest as well as both arms.  I am feeling very helpless.  They have done a bleomycin injection as they say the one in the chest is also to entertwinned. Do you know of any specialits we could talk to as we in africa and no one really knows what is going on here.
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