Two baby boys with Down syndrome take the same path but slightly different journeys.
As I sat by Che’s hospital bed watching him sleep, I thought I would browse the internet for any local Down Syndrome support groups. I quickly found ‘Up and Downs’ and gave them a text. I soon found myself sharing my story with the group leader, Jemma. Che had been a post birth diagnosis and I needed some support, she and her team kindly offered this. She introduced me to Melissa through a group message which suggested we might like to chat. Neither of us realised how this introduction would shape our journeys.
Che and Melissa’s little boy Bertie were born just 5 days apart. Both boys were still in hospital. Che had just had surgery for Hirschsprung disease and Bertie was in his local hospital with suspected Hirschsprung disease, and both boys also had a complete AVSD. After a week of chatting online, Melissa messaged to say that Bertie was not well and that he was going to be transferred to where we were at BCH. I remember at the time being excited to finally meet Melissa and Bertie in person. When Melissa arrived, she saw me in my room as she passed. She ran in and gave me the biggest hug! It was a hug that said a thousand words! She knew what I was going through! She felt how I felt! We did not speak any words. We did not need to! After a short stay, Bertie was transferred back to his local hospital and then home. We got to go home soon after.
As we were now both home, we arranged to go to the stay and play organised by Up and Downs. It was lovely to see Melissa and Bertie outside of the hospital. We sat on the sofa together drinking tea and comparing notes of life outside of the hospital. We laughed at how Bertie and Che had the same home nurse, the same heart cardiologist, and the same inclusion team. What a coincidence!
Unfortunately, that very night, Che started to struggle with his breathing and was rushed into our local hospital. He had RSV. I messaged Melissa to let her know what had happened and she explained that Bertie was also unwell. Sure enough, that very next morning, I walked out of my room to see Melissa coming out from the room opposite me! Bertie had been rushed in during the early hours of the morning. It turned out Bertie had RSV too. We ran and hugged each other! Is this really happening? Are we really both here in this hospital together? Have the boys really both got RSV! Melissa laughed! “its almost like they are copying each other” she said. Little did we know that this was going to end up being the truth! After a week stay, Bertie went home. Melissa and I commented at how this was starting to become a pattern. Che is always first in but always last out! A few day later Che was given the clear to go home too.
Just after Christmas, Che was again struggling to breathe. We took him to Accident and Emergency at BCH and were told that he again had RSV. I messaged and told Melissa and she thanked me for the heads up as Bertie would most likely follow suit. Believe it or not, a few days later Bertie was also rushed into his local hospital with RSV. After a week of being treated for RSV we were told by the doctors that they felt that Che’s symptoms were not all being caused by RSV. He was in heart failure and would need his AVSD repair now rather than in February. I remember messaging Melissa and chatting about how terrified I was. She was a great support and as she had known about Bertie’s AVSD before his birth she had lots of information and advice to give me. While waiting for surgery I received a phone call from Melissa to tell me that the doctors had seen Bertie and he was also in heart failure and was going to be transferred to BCH for emergency surgery. I remember looking at my husband and saying, “this can’t be for real, what are the chances, these boys!”
Che had his surgery first and after a few days in PICU, Bertie arrived after his surgery. We ran and hugged each other, both holding back the tears. Both boys continued to have a hard few weeks post-surgery. They became known by all the doctors and nurses in PICU as a bit of a terrible twosome. They again seemed to be copying each other. Every day, myself and Melissa would text each other from the opposite sides of PICU to offer each other support.
True to the normal pattern, Bertie left PICU before Che, and Che followed a few days after. This is when I feel that myself and Melissa really got to know each other. We were on opposite sides of the ward’s ICU for a few weeks and then we got moved into the same private room. The boys were both playing the same games on the doctors yet again! Both retaining fluid and both still needing oxygen. The doctors joked that putting them in the same room meant that they only needed to say everything once.
As room buddies, the boy’s routines quickly became in line. They ate at the same time, they slept at the same time and normally cried at the same time. I would walk in every morning and say, “morning boys” I would give Che a kiss and a hug before heading over to Bertie. Melissa would do the same. We would then spend the day chatting away and looking after our little ones. It was so lovely to have someone to talk to who understood! We were like one big hospital family.
After ten long weeks, Che decided he wanted to go home, this time before Bertie, after all, it was his turn to be first. We said our goodbyes and I promised Melissa I would be in touch every day. That very next week Bertie decided that he wanted to go home too! Our boys were both finally home!
I feel so lucky to have had Melissa with me on my journey. We have been on the same path the whole way with just slightly different journeys. We helped each other get through some hard days. We would make each other laugh and give each other a hug when we were having a bad day! Melissa taught me so much about Down Syndrome and where I could get support. She shared her life and family with me and for this I will be forever grateful! I thank my lucky stars that we were introduced! Thank you, Jemma! It shows how invaluable local support groups can be.
We are now counting down the days until we can reunite our boys. They are both now at the age to really interact with each other and without the restrictions of the hospital bed and oxygen wires. We are really looking forward to seeing the boy’s reactions and hopefully watching a beautiful friendship between them grow.
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“Up and Downs” provide subsidised learning activities and events in order to aid progression of children with Downs Syndrome in all aspects of life, whilst providing much needed support for families and guardians alike.
Find out more here http://www.upanddowns.org.uk