My daughter Millie was born with a lymphatic malformation (a benign tumour made up of fluid filled cysts) behind and around her left eye. Originally it was thought to be a haemangioma (strawberry mark) but an MRI scan confirmed it was a lymphatic malformation when Millie was about 9 months old. At this time, it was decided by doctors at Great Ormond Street Hospital that it didn’t need treating.
In May 2020, Millie’s eye began bleeding (like she was crying blood) at which point her doctors requested to see her to reassess the situation. At the appointment, it was decided that Millie would start treatment as her lymphatic malformation was getting bigger and now obscuring her vision which can result in long term problems, so it was important to start treatment straight away.
Her vision is the most important reason for why she has had her treatment early. Millie wears a patch for 2 hours a day and has recently got glasses too.
The treatment used to reduce lymphatic malformations is called sclerotherapy. It is injected with a drug (bleomycin was used on Millie) which aggravated the cysts, causing them to swell and then heal into scar tissue.
Her first sclerotherapy went well, although it was very swollen, she seemed happy and not in any pain. Until 3 days post-surgery, when she started screaming in agony and vomiting. After a long wait, it was eventually discovered that Millie’s lymphatic malformation behind her eye had had a bleed, causing it to swell and push her eye from its socket. She spent a further 3 days in our local hospital to reduce swelling and manage her pain.
Although this was a very traumatic time for her, Millie’s doctors at GOSH recommended more treatment, as the more treatment she had, the less likely the bleeds become. So, reluctantly, we agreed.
Thankfully, all went well with her next 2 treatments. Sclerotherapy is usually done in 3s. Each treatment is 6 weeks apart and after her 3rd treatment her doctors were pleased and didn’t think she would need any more.
However, the results from the 3rd sclerotherapy weren’t as good as we hoped for, so after a virtual consultation with Millie’s doctor, she suggested more treatment.
Her last treatment in April has been very successful. Millie’s doctor told us that the back of her eye is looking really good and there wasn’t anything there to treat this time. That alone is a huge step forward but having recently compared how her eye looks on the outside, the results this time have been amazing.
Lymphatic malformations are rare and unpredictable. Each one is different, so doctors can’t be sure of the process and results but so far, we are over the moon. Lymphatic malformations can flare up with hormone changes so we know Millie may have some obstacles to overcome in the future. But she’s a strong, determined, brave little girl so we know she’ll come through the other side.
We are so proud of Millie, she has been through so much already, and does it all with a smile on her face.
Written by Nina (mum)
You can follow Millie’s story here.