Living and Loving Life with Lymphatic Malformation/Cystic Hygroma
By Katie (@angels_monsters)
I was so excited to be leaving the hospital to show off my beautiful baby boy. My bag was packed, the other half was on his way with the car seat and my parents were getting ready to bring my daughter to meet her new baby brother. I proudly watched as the paediatrician carried out their final checks to allow us to be discharged, when I heard the words which still make me feel sick to my stomach: “I need to get a senior colleague to come up. I think something is wrong. Did you have scans and were they normal?”
The paediatrician had noticed a swelling on his right cheek. I told her not to be silly – it was just swelling from the labour and birth – that was about the time when my previously laid-back approach to parenting adjusted itself slightly! After several paediatricians, Samuel was diagnosed with lymphatic malformation (LM) – a condition whereby the lymphatic drainage system does not form correctly, leading to cysts (also referred to as cystic hygromas). Samuel was whisked away for blood tests to check for chromosomal abnormalities (which came back clear) and then for a scan to check the size and location of his cysts.
When we got home, I felt as if my world had come crashing down. Samuel was unable to feed as his cyst extended into his mouth, and I was still waiting the results of the dreaded chromosome screen. We were taken into the amazing Birmingham Children’s Hospital, so Samuel could be tube-fed, an MRI could be performed and Samuel’s oxygen levels could be monitored over a period of 10 days. A treatment plan was drawn up and we became very familiar with Samuel’s consultant, Michael Kuo, who has now achieved God-like status in our family! We were released, with a clear chromosome screen, some special teats for Sam to feed, a treatment plan and a feeling of confidence that the future did, in fact look bright after all.
The following months were amazing. Samuel started sleeping through 12 hours at 8 weeks (yay!!!), met all his developmental milestones early and quickly melted the hearts of all who met him. He is full of giggles and is a typical boy – loves rough and tumble, always filthy and has the cheekiest, most adorable grin I have ever seen (although I may be a teeny bit biased!). Life has continued as normal and the LM has, on the whole, had very little impact on our everyday lives.
Samuel has recently started a course of sclerotherapy treatment, so our hospital visits have become more regular. However, we know that this is short-lived and hopefully, the sclerotherapy will do its job. If not, there are other options. Samuel may always have a slight swelling on his face, but this will not be anywhere near its current size (it is currently swollen due to the effects of the sclerotherapy). Samuel being Samuel will no doubt meet his challenges head on and bulldoze through them, as he does everything else!
The most tragic thing about my story is that LM is often diagnosed during ultrasound scans in pregnancy and, when this happened, women are advised to consider termination. The message given to these women is that the babies are unlikely to survive the pregnancy or are likely to have all kinds of accompanying conditions or disorders. I have made contact with many many families worldwide where this is not the case at all. There are huge numbers of people who have treatment for LM early on in life and it never reoccurs. The condition is rare, so medical professionals in local hospitals have very little knowledge and paint the bleakest picture. The specialists at the childrens’ hospitals tell a very different story. I am all for women being given a choice, however an informed choice can only be made with the correct information. Would someone terminate if they were to know that their child would need glasses or have a small birthmark on their cheek? The thought that I could have ever been asked to consider termination when I have such a perfect little boy terrifies me.
I am aiming to raise awareness of this condition, to ensure that women are given the full and
correct information when it is diagnosed in utero. Even if one person reading this remembers it and passes on the information to someone having to make a heartbreaking decision, that is an immense achievement. In the meantime, Samuel will continue his sclerotherapy treatment, alongside causing havoc at home! IF he can raise awareness of LM, I’m sure he will not be too bothered as he is far more interested in eating us out of house and home and terrorising his sister!
Thank you so much for reading x