In September 2022 we found out that Marie was pregnant. At an early scan we were told there were not one, but two babies! The shock was real, but once we got over our immediate “oh my god” moment, we were so excited and couldn’t wait to share our news with our family and friends. We also found out that we were having identical (MCDA) twins which is even more rare, however a very high risk pregnancy. From that first scan onward, we were repeatedly told about all of the potential risks and complications this type of pregnancy carried. Despite the horrendous sickness and other pregnancy ailments, we made it to the 12 week scan where the babies were looking perfect as ever, and we’ll never forget the gorgeous photo we got of their two little bobble heads side by side. Best friends for life, what a gift. Early December we had further testing and also found out the genders. Two boys! Our hearts grew two times bigger.

At a routine 16 week scan, just days after celebrating the gender news, we had a twist of fate that any pregnant couple dreads- there’s something wrong and you need to see Fetal Medicine. That hospital couldn’t see us for 6 days in their unit, but we knew we couldn’t wait that long. We immediately went to the clinic on Harley Street where we’d been receiving private scans and were seen by the sonographer there. She confirmed that our sweet Arlo was very sick indeed and needed help ASAP. She actually pointed us in the direction of Professor Kypros Nicolaides, who is one of the most brilliant and pioneering minds in Fetal Medicine and is based at Kings College Hospital, but also had a practice on Harley street. By some stroke of luck, he happened to be there that day and had a cancellation so was able to see us.

After our 4th full anatomy scan of both babies that day, Professor Nicolaides was able to finally diagnose Arlo's condition - Lower Urinary Tract Obstruction. His bladder was so enlarged it was taking up his entire abdomen and this was resulting in irreparable kidney damage, and the low fluid in the amniotic sac meant that his lungs were not able to develop. He gave us the option to go in and insert a little shunt into his bladder to help it drain. This procedure was invasive and carried a miscarriage risk of the entire pregnancy. It didn’t take us long to decide that we wanted to do whatever we could to try and save him. The next morning we were off to Kings College and we had the procedure done.

The following week, we found out that the shunt had become dislodged and therefore the procedure failed. Cue to the discussions in the private rooms in hospitals made for delivering bad news. Topics and decisions we were having to make which are the ultimate worst case scenario; the ones you shudder at when you read them in the pregnancy books and think “that’s horrendous but no, it couldn’t happen to us”

The balance of the pregnancy was riddled with sadness, anxiety, grief, fear and stress. We were being monitored extremely closely until we reached 34 weeks where the babies were delivered by cesarean section on 12th April 2023. The best and worst day of our lives - we got to say hello to our beautiful, perfect Theodore, but had to say goodbye to our precious angel Arlo. To carry the overwhelming joy and love for your sunrise baby along with the sharp and harrowing grief for his sunset twin is sometimes more than one's heart can bear.

During our stay in the hospital, Theo had a purple butterfly card in his cot, which represented Arlo and alerted the neonatal staff that Theo was part of a multiple birth where one or more sadly passed away. This helped the constantly changing hospital staff be aware of our special circumstances and approach us with sensitivity. Immediately we felt such a connection to the purple butterfly and this has become such an important symbol for us. We think of Arlo in every butterfly we see.

We have chosen to create Arlo's Butterfly Fund through the Skye High Foundation, which was set up in 2016 by Millie and Lewis Cann, following the devastating loss of their twin daughter Skye. They created the Purple Butterfly cot card, which is used in conjunction with a poster that is placed around maternity and neonatal units, which explains the meaning of the purple butterfly. In addition, they have created packs which can be sent to either families or hospitals and now have memorial items available. Our aim with Arlo's Butterfly Fund is to raise money and awareness for the charity and help support other grieving families. One of the first projects we plan to work on is improving the antenatal support for families going through a similar experience.

Whilst we would give anything to have our darling boy here with us, we hope that we can make him proud and honour his legacy through his Butterfly Fund. Many thanks to all of those who have supported us in our journey and for any contribution to Arlo’s Butterfly Fund.

“Not all twins walk side by side, sometimes one has wings to fly”