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For families whose children live with Paediatric and Primary Lymphoedema

Definition of Cystic Hygroma

A cystic hygroma, (CH) also known as cystic lymphangioma and macrocytic lymphatic malformation (LM), it is a congenital multiloculated lymphatic lesion that can arise anywhere, but is classically found in the left posterior triangle of the neck and armpits. This is the most common form of lymphangioma.

Ezmae-Kate

Ezmae-Kate was born with Cystic Hygroma and she is the most delightful little minx you could every wish to meet.  I can say this because I am proud that she is my great granddaughter.  Her Cystic Hygroma was not picked up in the womb through all the baby scans, and although it was obvious at birth it was not officially diagnosed until the second day of her life.  She was referred to Birmingham Children’s Hospital and her Mum was told that she would be two before any treatment would take place.

Some days her CH is not that visible but if she becomes poorly or upset it is more visible.  The photographs on this page will show her journey at different stages of CH, but also shows how happy our little minx is and how she has a full and active life for her age.

Ezmae-Kate's LM

From the initial photographs you will see in the right hand column that in Ezmae-Kate's case it appears to be one big swelling.  Eventually as the swelling went down you could and feel little cysts under her skin.  Sometimes they would feel soft and spongy other times they would feel quite hard.  Some days to the untrained eye it would hardly be visible and on the days when she is not feeling well or upset then it is far more prominent

Diagnosis

We had a name for Ezmae Kate's swelling from the beginning, however at a later date she underwent diagnostic tests and scans to confirm the diagnosis and although it was called a Cystic Hygroma (CH) at birth, it wasn't until the scans were done that the term Lymphatic Malformation (LM) was used.  The scans enabled us to understand the extent of the lymphatic malformation.  I think diagnosis for any young family must be very scary and cause a lot of anxiety.  I know that my Granddaughter, Ezmae-Kate's Mum blamed herself, and it took a lot of reassuring from the family that this was not her fault.  However, as a family because of what I do in running L-W-O, we were able to research and have a better understanding of LM than someone who has not had our experience with Lymphoedema and the Lymphatic System. Which is why raising awareness is important. 

Lymphatic Sclerotherapy

So far Ezmae-Kate has undergone two LS procedures under general anaesthetic with a gap of two months between each procedure at Birmingham Children's Hospital by an interventional radiologist, followed by the scleropathy.  The first procedure produced some swelling which took about two weeks to go down with little bruising, but she did experience what seemed like some paralysis in her left arm. Difficult to tell with a little one, but she had a few days where she couldn't pick things up or hold things in her hand and this probably lasted about a week, but she didn't complain and as adults I think we were more worried than she was. When the second procedure was done swelling and bruising was significantly increased and took a while to go down.

My understanding is two more procedures were due to take place in March 2020 and the procedures would be closer together, having said that both procedures have been suspended due to Covid-19.

Complications

As a family we have been incredibly lucky that Ezmae-Kate so far has not had many complications. She has had no trouble feeding however, her breathing can sometimes be ragged especially at night, whether this would be different to any other child of her age is difficult to tell. Occasionally she gets a lump inside her mouth, but at this stage it has not caused too many problems. We know that cutting down on salt, drinking lots of fluids and making sure she has a healthy diet is important. Good skincare is essential and trying to keep her skin clean and well moisturised is so important. We are also aware that she is three and into absolutely everything, so 'play dirt' is part of the territory so are the falls, bruises, cuts, and grazes. Because she is three exercise or movement is not a problem because she never stops.

At birth

1st Sclerotherapy

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2nd Sclerotherapy

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Child Protection

L-W-O Community 4 families take child protection seriously.  The photographs on this page are of my great granddaughter and I have family permission to use them. 

  • L-W-O does not store any information on children  
  • L-W-O Community 4 families only communicates with the parent/legal guardian of a child
  • Photographs used on this website are most likely to be stock library photographs that I use under licence from our hosting company or under licence from our graphic design package.  
  • If we use a photograph for illustration purposes, then the child will not be identified

Full Policy being devised.

 


This page was part of our Children's web page published in January 2017

on our L-W-O Community website 

During the 2020 Lock down the idea developed and work started on this website to

compliment our Children's Support Group