Heartbreaking photo shows the moment when desperate mother finally said goodbye to her 13-year-old son
A ruined mother shared a photo with the heartbreaking moment when she had to take her sick son to their last goodbye.
Tammy Ireson, 39, from King’s Lynn, Norfolk, disabled Wilber’s life support when he was only 13 weeks old after a cardiac arrest had caused him serious brain damage.
Since then, she has decided to share the heart-wrenching image to help other parents experiencing loss see that even when “you feel this level of sadness and anxiety, you will survive and somehow find a way to live every day by coming ‘.
“I was able to walk him for the first time since Wilber was born,” Tammy said of the devastating moment when she was seen in tears. “But as I walked down the corridor with Wilber in my arms, I realized that this was our first and last walk together and I gave up. That is the moment when Mark took the picture of us. ”
Tammy Ireson, 39, from King’s Lynn, Norfolk, shared this heartbreaking photo from the time she had to walk her sick son Wilber, who was 13 weeks old, until their final goodbye
Describing the moment in the photo, Tammy (pictured with Wilber) said: ‘As I walked down the corridor with Wilber in my arms, I realized that this was our first and last walk together and I broke;
Wilber (pictured with mother Tammy and father, Mark) was born with a rare gene mutation that caused central-core disease – which affects muscles used for movement, and also resulted in Wilber who suffered from severe arthrogryposis – stiffness in his joints
Now Tammy has a teddy bear with a recording of Wilber’s heartbeat inside, as well as some of his ashes, which she takes on vacation, makes trips and sets up a place for special meal times, so that Wilber is still part of her family’s daily family life.
The little boy was born with a rare gene mutation that caused central-core disease – which affects muscles used for movement, and also resulted in Wilber suffering from severe arthrogryposis – stiffness in his joints.
He could not move or breathe without help and needed 24-hour care after his birth in May 2018.
“After the 20-week scan in which doctors first realized something was wrong, they repeatedly asked me if I wanted to end my pregnancy, but I said no every time,” Tammy explained.
“I loved him so much and believed that he deserved a chance at life. His prognosis looked bad and I didn’t want him to suffer, but I also held on to the hope that one day I could bring him home. “
However, it was not the intention, because Wilber suffered a cardiac arrest, leaving him without oxygen for a long time and irreparably damaging his brain 11 weeks after birth.
Tammy became pregnant out of the blue in October 2017, a month after she was scheduled for a hysterectomy to relieve the pain of her endometriosis. Depicted while heavily pregnant
Wilber (photo) was delivered after 32 weeks after caesarean section when she developed pre-eclampsia
In the weeks following Wilber’s arrival, Tammy said that they had both built up a “beautiful connection” and that “they had come to know his strong personality.” Pictured, Wilber in the hospital
For the life-changing turn, Tammy had enjoyed interacting with her little boy.
“In the weeks since Wilber arrived, we had built up a great bond and got to know his strong personality,” she said. “I loved him so much and I could feel how much he loved me.”
WHAT IS CENTRAL NUCLEAR DISEASE?
it is a hereditary condition that involves muscle weakness, skeletal abnormalities and an increased chance of a serious reaction to some anesthetic drugs.
Muscle weakness varies from mild to severe and usually affects muscles in the torso and thighs, although muscles in the neck and face can also be affected.
Skeletal abnormalities can be: curvature of the spine, dislocation of the hip or limited movement in certain joints.
The treatment depends on the severity of the symptoms and is mainly supportive.
Muscle weakness and skeletal abnormalities can benefit from physiotherapy or surgery.
Tammy fell from the sky in October 2017, a month after she was scheduled for a hysterectomy to relieve the pain of her endometriosis.
The chronic condition affects 1 in 10 women, is a major cause of infertility and is caused when cells such as those in the womb move elsewhere, resulting in internal damage and scarring.
When Tammy realized in October 2017 that she was expecting the baby from friend Mark, it was a wonderful bolt out of the blue.
“We had only been together for three months and I was worried about what Mark would say,” she recalled. “I knew I would have this baby, no matter what, because it was a miracle that I was pregnant at first. Fortunately Mark was completely helpful. “
The couple prepared enthusiastically for their new arrival and during their 20-week scan the sonographer realized that the baby was not opening his hands.
Tammy was referred for tests, but refused a amniotic puncture, knowing that she would keep her baby regardless of the diagnosis.
“With every appointment afterwards I was asked if I wanted to stop,” Tammy explained. “But I had waited for years to give my daughter Zilanne a brother or sister, and the life in me felt so precious.
“Wilber didn’t move much, but I felt him roll in response to my rubbing or knocking. The bond between us was strong from the start.
Doctors worked hard to identify Wilber’s condition, and Tammy hoped she could take him home and take care of him. Pictured, Wilber in the hospital
After the sonographer realized that the baby did not open his hands during the 20-week scan, Tammy was referred for tests – but she refused an amniotic puncture, knowing that she would keep her baby regardless of the diagnosis. On the photo, with friend Mark
After 12 weeks in NICU, Tammy was determined to bring her son home, but Wilber suffered a devastating cardiac arrest that seriously damaged his brain. Pictured together at the hospital
While doctors worked to identify Wilber’s condition, Tammy hoped she could take him home and take care of him.
But Tammy’s pregnancy was fraught with problems and Wilber gave birth after 32 weeks after caesarean section when she developed pre-eclampsia.
Wilber made no attempt to breathe and doctors rushed to NICU for life support.
WHAT IS ARTHROGRYPOSE MULTIPLEX CONGENITA (AMC)?
Arthrogryposis Multiplex Congenita (AMC) is a term used to describe more than 300 disorders that cause multiple bent joints in parts of the body at birth.
It varies from person to person with joint stiffness as joints and muscle weakness.
AMC is not a specific diagnosis, but rather a clinical finding of permanent shortening of joints, also called non-progressive congenital contractures.
AMC is non-progressive, which means that the lack of exercise does not get worse as time goes on. However, it is recommended that affected people seek advice to prevent possible further obstruction of the joints.
Occasionally AMC can also affect the central nervous system, the chance of survival being low.
“We didn’t know if he would save the first night, but he continued,” said Tammy.
“The nurses advised me not to disturb him too much physical contact, but I could see that my touch comforted him. Wilber liked to make his buttocks beat or to massage.
“With the passing of the days he became stronger and just like every new mother I got to know my son. I sang for him, hugged him and cherished him.
“He could not move his arms or legs, but after having had some physiotherapy, he was able to make small movements and loved rubbing his feet and back.
“We were deeply connected and I was so proud to see Wilber’s personality shine through.”
“He was as alert, cheeky and even grumpy when he wanted to be, causing the doctors to roll back their laps when he calmed down.
She added, “The nurses joked that everyone knew that Wilber wanted something because he stared so intently at the nurses that they could feel the power of his gaze through the room.”
Genetic testing ultimately showed that Wilber suffered from an RYR1 gene mutation, resulting in central nuclear disease and arthrogryposis – joint stiffness.
It was so rare that Tammy had set up an Instagram page hoping to make contact with other families with the same condition.
Genetic testing ultimately showed that Wilber (pictured in a hospital with Tammy) suffered from an RYR1 gene mutation, resulting in central nuclear disease and arthrogryposis – stiffness of the joints
Wilber’s condition was so rare that Tammy decided to set up an Instagram page hoping to make contact with other families with the same condition. Pictured with a photo of Wilber up
She also wanted to know what the future could mean for Wilber, because although his mobility was limited, his brain function was normal.
After 12 weeks in NICU, Tammy was determined to take her son home, but Wilber suffered a devastating cardiac arrest that seriously damaged his brain.
Tammy, who temporarily lived in the hospital to be close to her son, arrived within minutes and watched desperately as doctors struggled to resuscitate him.
“He finally came back, but the moment he opened his eyes, I knew my little boy was gone,” Tammy recalled. “His eyes were empty and he no longer seemed to recognize me.
“Wilber no longer responded to my touch and the connection between us was gone. I was broken. “
Doctors advised Tammy to give Wilber time to recover from brain injury, but after two weeks the damage turned out to be irreversible.
Tammy realized how extensively Wilber’s body and mind suffered due to his complex circumstances and made the difficult decision to withdraw her son’s life support.
On the last day, a team of doctors helped the couple go to a private room to say goodbye – that’s when the heartbreaking photo was taken.
Tammy recognized how extensively Wilber’s body and mind suffered due to his complex circumstances and therefore made the difficult decision to withdraw her son’s life support. Pictured, with son WIlber
The desperate mother loved and comforted Wilber (pictured together) while his life support was withdrawn and took pictures of their last hugs
“We had agreed in advance to take as many photos as we could,” said Tammy distraught. “Although those moments would be so painful to visit again, it would not have been infinitely worse not to have images of every precious last minute with our son.”
Tammy held onto Wilber and comforted when his life support was withdrawn, took pictures of their last hugs and sang to him and told him not to be afraid.
Tammy held onto Wilber as he breathed his last breath and then she was able to spend nine days with her son thanks to a specially adapted cold “cuddle bed” supplied by East Anglian Children’s Hospice.
After she and her son moved to the hospice, specialized nurses helped Tammy make prints of Wilber’s hands and feet and saved a lock of hair.
Tammy also took Wilber there for a stroll in a pram, sat on the swings with him in the playground of the hospice, and posed for smiling pictures with her son, hiding the sheer pain she was experiencing.
It was the first time she could take pictures of Wilber’s face without tubes and wires that covered it.
Those photos now occupy a prominent place in a niche in the home of Tammy and Mark who is dedicated to Wilber. Candles burn on his shelves every day.
“Sadness for a lost child never diminishes, but somehow we become strong enough to tolerate it,” Tammy said. “I miss Wilber so much and not an hour goes by that I don’t think about what our future with him would have looked like, but I am so grateful for the 13 weeks and two days I felt my boy’s warmth.”
After Tammy and her son moved to the hospice, specialized nurses helped her make prints of Wilber’s hands and feet and saved a lock of hair. Pictured, both together
Tammy explained how she still does everything she can to ensure that Wilber is still part of the daily life of her family. On the photo a tribute bench for Wilber
Tammy has an elephant teddy bear (photo) with a recording of Wilber’s heartbeat inside, as well as some of his ashes, which she takes on vacation, trips and a place for during special meal times,
Now Tammy is determined to give Zilanne and Wilber a brother or sister and is devoting herself to getting pregnant this year.
“Before I became pregnant with Wilber, I had given up on my dream of having another baby and signed up for a hysterectomy,” she said. ‘I am so grateful to Wilber that he helped me realize that I cannot give up on that dream.
“I hope I can bring his little brother or sister into this world and raise them so they know everything about their amazing big brother.
“I know that the picture that brutally captured my suffering may be disturbing for others to see, but I also know that so many people who have experienced the same loss have found comfort in knowing that they are not the only ones of this magnitude have felt sadness.
She continued: “By sharing this image and others of Wilber’s journey on social media, I have had contact with many grieving parents and we have survived these experiences together.
“Death is still a taboo in society, but even more so when it comes to losing a child. I do my bit to break that taboo so that those who lose a child may also be able to talk about their loss and thereby find both support and comfort. “
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