Story
On the 5th of January 2021 Katie gave birth to her and Matt's two beautiful twin boys Tate & Bodin Langford.
In the following text this is Katie in her own words talking about the devastating news of Bodin's condition.
Behind the scenes we have been battling with tragic news that our little baby Bodin has one of the most serious heart conditions that is not compatible with life. From birth we were rushed to a children’s hospice and predicted that Bodi would likely only live around 5 days. Fast forward over 5 weeks and he is still here, remarkably, and we have cherished every second.
After consultations in Bristol Children’s cardiology hospital this week we have been offered a series of major open heart surgeries that could offer him a potential for life, however his little heart will never be fully repaired. We have not taken the decision making lightly, as with surgery comes the highest risks including fatality. Recovery is very long and unpredictable path. It also means we need to continue to stay in Bristol for his treatment.
It’s a lot to ask of Bodin to go through such invasive procedures, however Bodin seems to have gone against the odds. The next steps are up to him. He has chosen to stay with us till now, if he can, he will carry on using that strength to be with us now and into the future.
This is our only opportunity to keep him with us, a chance to remain with his twin brother Tate and a chance to hopefully grow up in our loving family.
Katie and Matt are our best friends and it breaks our hearts to see what this family is having to go through and the uphill battles that they will face.
Bodin has been diagnosed with a rare critical congenital heart defect that without a stage of surgical intervention, is not compatible with life and is lethal. Hypoplastic Right Heart Syndrome (HRHS) is a congenital heart defect in which the right-sided structures (tricuspid valve, right ventricle and/or pulmonary valve) are underdeveloped or not formed. When these structures are too small or do not function properly, the right side of the heart cannot send blood to the lungs.
Bodin is currently in ICU in Bristols childrens hospital, which means Katie, Matt and Tate are living up there to support their son and twin brother. Due to the pandemic they're not all allowed to be by Bodins side altogether. This means at times leaving Bodin on his own to exchange roles in being with Bodin by his bedside and looking after Tate in a small studio apartment. A time when they should be together as a family but are separated by this awful situation. Everyday this means getting taxis back and forth to the hospital to quickly be where they need to be. They do not have a normal living situation with basic amenities which is hard with a newborn and the stress they are under during these times.
We do not have a time frame on how long their lives in Bristol will be but we do know this is not going to be over quickly and will be a lifetime process. Bodin will need a series of open heart surgeries to try to keep him alive, however his heart will never be fully cured and he may have lifelong heart complications. The surgical procedures for HRHS was only introduced in the 1980s and little is known about longer term outcomes for people. The risk factors for death at any time after each stage of surgery remains high despite advances in treatment.
Bodin will need very regular follow up appointments in Bristol for the rest of his life if he survives the complexities of surgery and ultimately may require a heart transplant. As you will understand with Katie being on maternity leave and Matt not being able to work, paying for a life in Bristol along with their mortgage for their house in Plymouth and normal outgoings is an added strain, one that they do not need and hopefully one we will be able to help with.
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Thank you for your time.
Sending the Langford family all our love.
