A ʜᴇᴀʀᴛʙʀᴏᴋᴇɴ woman has posted a snapshot of the sad moment she had to take her sick son to their final farewell. Tammy Ireson, 39, of King’s Lynn,
Norfolk, turned off Wilber’s life support at the age of 13 weeks after he suffered serious brain ᴅᴀᴍᴀɢᴇ following a ᴄᴀʀᴅɪᴀᴄ arrest. She has subsequently decided to publish the ʜᴇᴀʀᴛʙʀᴇᴀᴋɪɴɢ image in the hopes of encouraging other parents who are ɢʀɪᴇᴠɪɴɢ to realize that even if they are feeling “this degree of ᴘᴀɪɴ and ᴀɴɢᴜɪsʜ,” they will “survive” and “find a way to get through each day.”
Tammy now has an elephant teddy with a recording of Wilber’s heartbeat inside, as well as some of his ashes, which she takes on vacations, trips, and places at special meal times to ensure Wilber remains a part of her family’s everyday lives. Wilber was born with a rare gene ᴍᴜᴛᴀᴛɪᴏɴ that caused central-core ɪʟʟɴᴇss, which impairs the muscles needed for movement, as well as severe ᴀʀᴛʜʀᴏɢʀʏᴘᴏsɪs, which causes stiffness in the joints. After his birth in May 2018, he was unable to move or breathe without assistance and required round-the-clock care.
Wilber, unfortunately, had a heart collapse that left him without oxygen for an extended period of time, irreversibly ɪɴᴊᴜʀɪɴɢ his brain 11 weeks after his birth. Tammy had been enjoying connecting with her little son before the life-changing shift. Tammy was unexpectedly pregnant in October 2017, just a month after being scheduled for a ʜʏsᴛᴇʀᴇᴄᴛᴏᴍʏ to ease the ᴀɢᴏɴʏ of her ᴇɴᴅᴏᴍᴇᴛʀɪᴏsɪs. The ᴄʜʀᴏɴɪᴄ ɪʟʟɴᴇss, which affects one out of every ten women and is a significant cause of ɪɴfᴇʀᴛɪʟɪᴛʏ, occurs when cells similar to those present in the ᴡᴏᴍʙ migrate elsewhere, causing internal ᴅᴀᴍᴀɢᴇ and scarring.
It was a remarkable bolt out of the blue when Tammy found out she was pregnant with her boyfriend Mark’s kid in October 2017. The couple was thrilled to be expecting their first child, and during their 20-week scan, the sonographer noticed the baby wasn’t moving his hands.
Tammy was recommended for tests, but she declined an amniocentesis since she knew she would retain her baby regardless of the results. Tammy hoped she’d be able to bring Wilber home and care for him while doctors tried to figure out what was wrong with him. Tammy’s pregnancy, however, was riddled with complications, and Wilber was born at 32 weeks after an ᴇᴍᴇʀɢᴇɴᴄʏ Cᴀᴇsᴀʀᴇᴀɴ section due to pre-ᴇᴄʟᴀᴍᴘsɪᴀ.
Wilber made no attempt to breathe, so medics took him to the NICU, where he was given life support. Wilber had an RYR1 gene ᴍᴜᴛᴀᴛɪᴏɴ, which caused central core ɪʟʟɴᴇss and ᴀʀᴛʜʀᴏɢʀʏᴘᴏsɪs, or joint stiffness, according to genetic testing. Because it was so uncommon, Tammy created an Instagram profile in the hopes of connecting with other families who were sᴜffᴇʀɪɴɢ from the same issue. She also wanted to know what the future held for Wilber, considering his brain function was normal despite his restricted mobility. Tammy was ᴅᴇsᴘᴇʀᴀᴛᴇ to bring her son home after 12 weeks in the NICU, but Wilber had a catastrophic ᴄᴀʀᴅɪᴀᴄ arrest, leaving him profoundly brain-ᴅᴀᴍᴀɢᴇᴅ.
Tammy, who was staying at the hospital temporarily to be near her son, came within minutes and watched helplessly as medics attempted to resuscitate him. Doctors recommended Tammy allow Wilber time to heal from his brain ᴛʀᴀᴜᴍᴀ, but the ᴅᴀᴍᴀɢᴇ was irreparable after two weeks.
Tammy took the difficult choice to remove Wilber’s life support after recognizing how much his body and mind were sᴜffᴇʀɪɴɢ as a result of his complicated ɪʟʟɴᴇsses. A team of medics assisted the couple in moving to a private room to say their goodbyes on the fateful day, which is when the ᴛʀᴀɢɪᴄ photo was shot.
Tammy held Wilber and soothed him while his life support was turned off, photographing their final hugs and singing to him and telling him not to be ᴀfʀᴀɪᴅ. Tammy held Wilber as he drew his ᴅʏɪɴɢ breaths, and owing to a specially modified chilly ‘cuddle cot’ provided by East Anglian Children’s Hospice, she was able to spend nine days with him. Tammy was able to take prints of Wilber’s hands and feet and keep a strand of his hair after relocating to the hospice with her son. Tammy also took Wilber for a stroll in a pram, went on the swings with him in the hospice’s playground, and posed for happy photographs with him, despite the fact that she was in ᴇxᴄʀᴜᴄɪᴀᴛɪɴɢ ᴘᴀɪɴ.
It was the first time she’d been able to photograph Wilber’s face without the use of tubes and wires. Those photographs are currently displayed in an alcove devoted to Wilber at Tammy and Mark’s house. Every day, candles in his remembrance ʙᴜʀɴ on the shelves. Tammy is now determined to give Zilanne and Wilber a sibling and has set the goal of becoming pregnant this year.
