Thank you for agreeing to take part in out parent interview series, please could you share a bit about your family and where in the world you are?
My name is Lucy and I am engaged to Tom. In September 2021 we gave birth to our first baby, our beautiful daughter Lola. She was born 2 weeks early on the 6th September. We currently live in West Yorkshire.
What is the condition or syndrome that your child has and how does it affect them?
Lola has three birthmarks which are medically known as ‘haemangiomas’ – more commonly known however as a ‘strawberry mark’. At points, these marks caused Lola pain and distress as they began to ulcerate. Her lip ulcerated quite badly to the point it bled frequently and stopped her from feeding. The haemangioma surrounding her ear began a rapid growth stage at around 6 weeks old, leading to her ear closing up and a large lump being formed.
Lola spent 8 nights in hospital where she was started on a medication to help reduce the swelling, and colour of her haemangiomas. She had to undergo many tests such as ultrasound scans, ECG, blood tests and even and MRI scan to check for internal haemangiomas. Luckily, the results from all these were positive and she reacted well to he medication. The medication has now worked extremely well to heal the ulcerations of her marks, which have meant that she is now no longer in pain with them. We are seeing great results from the medication!
What has been the hardest part of your journey as a parent so far?
The hardest part of the journey so far, as a parent, was the hospital stay. We took Lola to A&E when we desperately worried about her, not quite knowing what was going to happen. She ended up being admitted from there, and because it was COVID regulations only one parent was allowed to stay. It was extremely hard to see your 6 week old baby go through so many tests, to be prodded and poked, and see her in so much pain. However, doing this all alone as a brand new mum made it even more challenging and upsetting. Not knowing what was growing and changing on your babies body was so scary, and even though you knew being in hospital was the best place for her, it was hard having to stay in there alone with not even a visitor allowed. Seeing Lola have blood taken, seeing her hooked up to machines, fasting her, being put under anaesthetic for the MRI scan and everything else on top of this was so challenging.
What do you think has been your child’s biggest challenge or struggle?
When Lola’s haemangiomas on both her lip and ear ulcerated, this was particularly hard for her. As she was so young, I could not explain what was happening and she could not understand why it was hurting her to feed, get dressed etc. This was the hardest time with Lola, as she was constantly very upset and in pain. We had to put creams on her ulcerations and dress her ear with a bandage, which hurt her when we touched it. It was extremely hard not to be able to explain that we were trying to help her get better. The ulceration on her lip posed such a large struggle for her feeds, which is originally why we had to go to A&E. It was becoming too much of a challenge for her to feed successfully.
How have people responded or reacted to your child and how has this impacted them and you?
When Lola’s ear had swollen extremely large, she often got stares and second glances. Luckily, Lola is only 7 months old and therefore totally oblivious to this at the moment, but I do dread the day she begins to notice this. For me, the stares and glances do hurt my feelings. At one point, it really bothered me. However, since starting the @thelifeoflola___ page, I have been able to connect with other parents who are going through the same thing, which has given me so much more confidence, an outlet to vent and also a place to educate others on topics surrounding birthmarks in the hope that people stop and think before they stare or comment on someone with a visible difference.
What do you wish people knew about your child before they make assumptions based on their appearance?
I think I have noticed that there are two extremes in Lola’s case. Some people look at Lola’s marks (which are crimson red) and automatically assume she is poorly and in serious pain because of the colour of the marks. I wish I could assure people that Lola is doing great and she isn’t in any pain anymore. On the flip side, I get a lot of flippant comments about how Lola’s mark is ‘just a birthmark’ that will one day ‘go away’. To these people – I wish I could sit down and explain the entire journey so far, and also the potential future journey for Lola. This may make people realise that this is simply not just a ‘birthmark’ and sometimes, there are more serious implications to having a haemangioma.
What has loving your child taught you or how has it changed you?
Before Lola, I wasn’t the kind of person who would have ever stared or made comments about people in any way – their appearance, personality, likes, dislikes. As a teacher, a value of kindness is something I always want to instil into my students, and that includes me being a role model for this. However, having Lola who has such a visible difference has changed me in more ways than I could ever imagine. She has sparked a passion in me for raising awareness, both for birthmarks and any visible difference in general. She has turned me into an advocate and her biggest fan! She has made me stronger than I ever thought possible, to the point peoples stares or comments do not bother me anymore.
If you could change anything for your child, what would it be and why?
I wish that I could have taken away that pain for Lola in the first few weeks of life. I feel like Tom and I missed out on the first few months of Lola’s life due to her being poorly and in hospital, and I wish that we could get that time back with our first born baby. I wish I could change the way strangers glance at her and the comments people may make, but unfortunately I cannot. All I can do is continue to raise awareness, share her beautiful photos and educate as many people about birthmarks in the bid that it will make people think twice before staring or commenting.
What are you most proud of about your child and why?
I am so proud of how brave and resilient Lola is – she was much braver than me during her hospital stay and at all her appointments since. She is able to tackle anything with a smile on her face, charming the nurses and doctors wherever she goes. I am proud watching her grow, learn and develop each day. I know Lola does not yet realise that she has a visible difference, but I know when the day comes, I will be proud of her for loving her marks as well as being a kind and considerate child who understands many different walks of life.
If you could give any advice to a parent in a similar position to you, what would it be?
My advice for any parent in this position is to trust and follow your parental instincts. For a few weeks, we were told Lola was fine and that she wasn’t in any pain. We were assured that it was a ‘birthmark’ that would ‘disappear without intervention’. Sometimes this is the case with strawberry marks, but sometimes it isn’t. Tom and I knew that there was something not quite right, which is why we took her to A&E. It was the best decision we ever made and ended up being the best thing we did for Lola.
As well as this, don’t be afraid to reach out to other parents. I am currently running a project called #ShowOffYourStrawberry . This project aims to share a vast array of stories and photos of strawberry marks from all across the globe. If you are worried, use a real life resource such as this and use it to learn and connect with others going through the same journey as you. I can assure you that someone will help, they did for me and I am forever thankful for those people.
Finally, please do not be embarrassed. Strawberry marks are so common, and they make your children so beautiful and unique. Please show them off, show off their photos and share their stories and raise them to be proud of their marks!
Finally, if you are open to other parents getting in touch with you or following your journey, where should they go? (Ignore this if you wish)
Please feel free to visit our Instagram page @thelifeoflola___ to follow Lola’s journey, as well as other parents journeys of their strawberry babies. My inbox is always open for a chat and I also do monthly Birthmark Q&A sessions via Instagram stories for you to send your questions in