Arlo the Trailblazer - From surgery at two days old and becoming a social media star thanks to Fancy Dress Fridays
You may recognise Arlo, the brave, strong-willed Birmingham Children’s Hospital patient who is fast becoming a social media star thanks to his Fancy Dress Fridays.
The Wolverhampton family’s now weekly tradition of dressing up their son has caught the attention of Instagram followers, including renowned magician, Steven Frayne (AKA Dynamo) and Love Island’s, Jess Wright. The family have even been rubbing shoulders with celebrities like Emma Willis and the football team Aston Villa.
The three-month-old has been diagnosed with Total Anomalous Pulmonary Venous Connection (TAPVD) – a rare congenital heart defect that affects around 8 out of 100,000 live births.
The condition causes a defect in the veins leading from the lungs to the heart.
In TAPVD, the blood does not take the normal route from the lungs to the heart and out to the body. Instead, the veins from the lungs attach to the heart in abnormal positions and this problem means that oxygenated blood enters or leaks into the wrong chamber.
Arlo, whose condition has caused other issues, such as fluid in his lungs (Chylothorax), has spent all of his life being cared for at our Children’s Hospital on our Paediatric Intensive Care Unit (PICU) and Ward 11 (Cardiac); undergoing pioneering complex surgery when just days old. He has had several surgical procedures so far in his life.
Despite all of the challenges, Arlo and his parents, Gemma Wadsworth and Dale Maxwell, have faced they have remained extremely positive and have been blown away by the response on Instagram to their Fancy Dress Friday fun with their son.
The pair named their son “Arlo” to signify strength and bravery. He has certainly lived up to the name.
Gemma, from Codsall, said: “He loves to know what is going on. He’s a curious baby, who’s very sociable.
Dale and Gemma started posting regular updates about Arlo on social media.
Gemma and Dale explained: “The fancy dress Fridays started at Halloween for a bit of fun. We first started using social media when Arlo was past his due date by ten days as a way to update friends and family instead of sending individual texts to people. It has got way bigger than that”
“It was all such a shock to us when Arlo became ill so quickly. I have never known anybody before with a story like this, that’s had a baby and needed to go straight into hospital with such an ordeal.
“There's lots of suspense. There's lots of emotion. In a day, you can have lots of ups and downs. At first, you have this adrenaline kicking in your body to get you through some of the trauma and then obviously over time, those endurance and stamina levels do get lower.”
Gemma added: “You get to feel very tired and that’s when you need people around you.
“The response to our posts on Instagram has been really positive and supportive.
“There are a lot of people invested in Arlo’s journey. It has become bigger than us now as everyone wants to know. We have people messaging asking how he is if we haven’t posted.
“Even people we have lost touch with years ago have reached out and made it known that they support us and are thinking of us.”
Arlo and his family will spend Christmas at our Children’s Hospital. Whilst our teams understand this isn’t ideal, they also do everything they can to make the festive period as special as possible for those children and their loved ones with us. The family plans to make the most of this time together
Dale said: “Arlo will never be that small again and we will never have that time with him again so although we are in hospital and he is really ill we need to make the most of the situation.
“We have been trying to create these moments on social media where we could have a bit of escapism and a bit of fun.
“We will look back at those pictures and videos forever now and we will cherish them and have a little laugh in the future.”
Whilst Gemma and Dale are eager to get their boy home they also have high hopes for their firstborn to live a fulfilling relatively normal life with his conditions.
Dad Dale said: “I am ridiculously proud of Arlo. It has been horrendous at times. We were in a really dark place and told he might not make it and now he has somehow done a complete U-turn getting closer to being better.
“I couldn’t be prouder of him. It’s crazy to say you can be inspired and in awe of a three-month-old baby as I am 36 but he is amazing.
“Arlo will go through a serious surgery then the next day he’s just there smiling.”
Are you wondering what Arlo will be wearing this Friday? Be sure to check out our Children’s Hospital Instagram.