Until our daughter was born we had never heard of the condition Cystic Hygroma and it makes sense that we wouldn’t have as it only affects 1 in every 6,000 to 10,000 babies (different sources quote different figures).
A lot of the time cystic hygromas are picked up on scans early on in pregnancy and can be a sign that things are not developing as they should be. If it is picked up on an early pregnancy scan, it can be a sign that is linked into a chromosomal problem such as Turners Sydrome and Downs Syndrome. If it is picked up on later scans or at birth then it is often an isolated cystic hygroma that isn’t linked to a generic condition. They can also appear in infancy but not usually in adulthood.
A cystic hygroma forms when the lymph vessels fail to form correctly during the first few weeks of pregnancy. Unfortunately, it cannot be prevented as it occurs so early in pregnancy, usually before the pregnancy is confirmed. It usually occurs when there is a block stopping the fluid from draining properly. It is usually situated around the neck region.
Isla’s cystic hygroma is on the right hand side of her neck and has stayed roughly the same size since birth (5cm by 4cm which is quite substantial for a newborn). When she was 2 weeks old it looked like a much smaller secondary one had formed but it’s just some of the fluid from the main site draining into another little pocket. It doesn’t affect her at the moment and she is quite content to lie on it and move around and breathe like any other newborn. It also doesn’t affect her feeding.
(On right hand side of her neck)…
(It’s starting to go down a little as she gets bigger)
When she was born it was a bit of a shock to the system because, even though you worry throughout pregnancy, we had no reason to think anything was wrong with our baby. It wasn’t actually even noticed till around 10 minutes after she was born and then all of a sudden doctors were being called down to come have a look at her. It was a bit of a whirlwind and we didn’t pick up much information from them at that stage.
After a night on the postnatal ward another paediatrician came to see us, explained everything about the cystic hygroma in a bit clearer detail and was much more sympathetic to how we were feeling.
I felt so guilty, I felt like it was something I did wrong that had caused it even though they explained this wasn’t the case. I was so worried about her future as well. No one wants their child to have any additional difficulties in life and I couldn’t stop thinking of how people might react when they saw it. It sounds silly, and I was jumping ahead of myself, but I just couldn’t stop thinking ‘but what if this means she can’t make friends at school etc’. We live in a pretty mean and looks obsessed society these days and I would absolutely hate for Isla to fall victim to any stupid remarks or people treating her as different.
Where we are now…
We were referred to a consultant at the hospital I had Isla in and also to a specialist consultant surgeon at Southampton Hospital.
We’ve had an ultrasound scan to figure out what the underlying structure of the cystic hygroma was. This appears to be positive – i.e. it is one main structure with a possible couple smaller structures within it as opposed to lots of little structures.
We popped up to try and see the consultant at Portsmouth straight after the scan to try and put our minds at ease as we didn’t feel we were getting enough information and at this point the other appointments hadn’t come through. It was really upsetting to think we were being forgotten. He couldn’t believe we hadn’t had the referral appointments through and took it upon himself to do some investigating for us.
He also ran blood tests on Isla to confirm that it wasn’t anything genetic. These came back clear this week which was great news.
He’s been in touch a couple times and said that the team at the Southampton hospital had discussed Isla’s case this week in their team meeting. Our appointment with them has still yet to come through but I think they want to see her to ascertain whether surgery is needed now or if it can wait a while.
It sounds like they hope it will decrease as she gets bigger but if not it would be a case of surgery or a type of injection to remove it.
Such a thought 🙁
I just thought, as there isn’t a great deal of relative, real life information out there about cystic hygromas, that we’d share our story so far.