A devastated mother has shared a photo showing the heartbreaking moment she had to walk her ill son to their final goodbye.
Tammy Ireson, 39, from King’s Lynn, Norfolk, switched off Wilber’s life support when he was just 13-weeks-old, after a cardiac arrest left him severely brain-damaged.
She has since decided to share the heart-wrenching picture to help other parents experiencing loss see that even when ‘you feel this level of grief and anguish, you will survive it and somehow find a way to get through each day.’
‘For the first time since Wilber‘s birth, I was able to take him for a walk,’ said Tammy, speaking of the devastating moment where she can be seen in tears. ‘But as I moved down the corridor with Wilber in my arms, I realised that was our first and last ever walk together and I broke down. That’s the moment Mark captured the picture of us.’
Tammy Ireson, 39, from King’s Lynn, Norfolk, shared this heartbreaking photo showing the moment she had to walk her ill son Wilber, who was 13-weeks-old, to their final goodbye
Describing the moment in the photo, Tammy (pictured with Wilber) said: ‘As I moved down the corridor with Wilber in my arms, I realised that was our first and last ever walk together and I broke down;
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 suffering severe arthrogryposis – stiffness in his joints
Now, Tammy has an elephant teddy with a recording of Wilber’s heartbeat inside, as well as some of his ashes, which she takes on holidays, outings and sets a place for at special meal times, ensuring Wilber is still a part of her family’s daily 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 severe arthrogryposis – stiffness in his joints.
He was unable to move or breath unaided and needed around-the-clock care after his birth in May 2018.
‘After the 20-week scan when doctors first realised something was wrong, they asked me repeatedly if I wanted to terminate my pregnancy but I said no every time,’ explained Tammy.
‘I loved him so much already and believed he deserved a shot at life. His prognosis looked poor and I didn’t want him to suffer, but I also held onto hope that I’d be able to bring him home one day.’
It wasn’t meant to be however, with Wilber suffering a cardiac arrest that left him without oxygen for a prolonged time, irreparably damaging his brain 11 weeks after his birth.
Tammy fell pregnant out of the blue in October 2017, a month after being scheduled for a hysterectomy to relieve the pain of her endometriosis. Pictured, while heavily pregnant
Wilber (pictured) was delivered at 32 weeks following an emergency Caesarean Section when she developed pre-eclampsia
In the weeks following Wilber’s arrival, Tammy said they had both built a ‘beautiful connection’ and she had ‘gotten to know his strong personality.’ Pictured, Wilber in hospital
Before the life-changing turn, Tammy had been enjoying interacting with her little boy.
‘In the weeks since Wilber had arrived, we’d built a beautiful connection and I‘d gotten to know his strong personality,’ she said. ‘I loved him so much and I could feel how much he loved me back.’
WHAT IS CENTRAL CORE DISEASE?
it is an inherited condition that involves muscle weakness, skeletal abnormalities, and an increased chance of having a severe reaction to some anesthesia medications.
Muscle weakness ranges from mild to severe and typically affects muscles in the trunk and upper legs, though muscles in the neck and face can also be affected.
Skeletal abnormalities may include curving of the spine, dislocation of the hip, or restricted motion in certain joints.
Treatment depends on the severity of symptoms and is mainly supportive.
Muscle weakness and skeletal abnormalities may benefit from physical therapy or surgery.
Tammy had fallen pregnant out of the blue in October 2017, a month after being scheduled for a hysterectomy to relieve the pain of her endometriosis.
The chronic condition affects 1 in 10 women, is a leading cause of infertility, and is caused when cells like the ones found in the womb move elsewhere, resulting in internal damage and scarring.
When Tammy realised she was expecting boyfriend Mark’s baby in October 2017, it was a miraculous bolt out of the blue.
‘We’d only been together for three months and I worried what Mark would say,’ she recalled. ‘I knew I’d be having this baby no matter what because it was a miracle I was pregnant in the first place. Luckily, Mark was fully supportive.’
The couple excitedly prepared for their new arrival and at their 20-week scan the sonographer realised the baby wasn’t opening his hands.
Tammy was referred for tests but refused an amniocentesis, knowing she‘d keep her baby regardless of any diagnosis.
‘At every appointment afterwards, I was asked if I wanted to terminate,’ Tammy explained. ‘But I’d waited years to give my daughter Zilanne a sibling and the life inside me felt so precious.
‘Wilber didn’t move much but I felt him rolling in response to me rubbing or patting my bump. The connection between us was strong from the start.
Doctors worked hard to identify Wilber’s condition, and Tammy was hopeful she’d be able to bring him home and take care of him. Pictured, Wilber in hospital
After the sonographer realised the baby wasn’t opening his hands at the 20-week scan, Tammy was referred for tests – but she refused an amniocentesis, knowing she‘d keep her baby regardless of any diagnosis. Pictured, with boyfriend Mark
Following 12 weeks in NICU, Tammy was determined to bring her son home, but Wilber suffered a devastating cardiac arrest that left him severely brain-damaged. Pictured, together in hospital
Whilst doctors worked to identify Wilber’s condition, Tammy was hopeful she’d be able to bring him home and take care of him.
But Tammy’s pregnancy was fraught with problems and Wilber was delivered at 32 weeks following an emergency Caesarean Section when she developed pre-eclampsia.
Wilber made no attempt to breathe and medics rushed him to NICU for life support.
WHAT IS ARTHROGRYPOSIS MULTIPLEX CONGENITA (AMC)?
Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth.
It varies from person to person with the commonality being stiff joints and muscle weakness.
AMC is not a specific diagnosis but rather a clinical finding of permanent shortening of joints also referred to as non-progressive congenital contractures.
AMC is non-progressive meaning that the lack of movement, does not get worse as time goes by however, it is recommended that people affected seek advice to potentially prevent further impediments of the joints.
Occasionally AMC can also affect the central nervous system of which the survival rate can be low.
‘We didn’t know if he’d make it through the first night but he pulled through,’ said Tammy.
‘The nurses advised me not to disturb him with too much physical contact but I could tell my touch brought him comfort. Wilber loved having his bum patted or being massaged.
‘As the days went by, he grew stronger and like any new mum, I got to know my son. I sang to him, cuddled him and cherished him.
‘He couldn’t move his arms or legs but after having some physiotherapy, he was able to make little movements and loved having his feet and back rubbed.
‘We bonded deeply and I felt so proud watching Wilber’s personality shine through.’
‘He was so alert, cheeky, and even grumpy when he wanted to be, causing the doctors doing their rounds to circle back when he’d calmed down.
She added: ‘The nurses joked everybody knew when Wilber wanted something because he stared so intently at the nurses, they could feel the strength of his gaze across the room.’
Genetic tests finally revealed Wilber was suffering a RYR1 gene mutation, resulting in central core disease and arthrogryposis – stiffness of the joints.
It was so rare, Tammy set up an Instagram page, hoping to connect with other families dealing with the same condition.
Genetic tests finally revealed Wilber (pictured in hospital with Tammy) was suffering a RYR1 gene mutation, resulting in central core disease and arthrogryposis – stiffness of the joints
Wilber’s condition was so rare, Tammy decided to set up an Instagram page, hoping to connect with other families dealing with the same condition. Pictured, holding up a picture of Wilber
She also wanted to find out what the future might hold for Wilber, because even though his mobility was limited, his brain function was normal.
After 12 weeks in NICU, Tammy was determined to bring her son home but Wilber suffered a devastating cardiac arrest that left him severely brain-damaged.
Tammy, who was temporarily living in the hospital to be close to her son, arrived within minutes and watched despairingly as medics struggled to resuscitate him.
‘He did eventually come back but the moment he opened his eyes, I knew my little boy was gone,’ Tammy recalled. ‘His gaze was vacant and he no longer seemed to recognise me.
‘Wilber didn’t respond to my touch anymore and it the connection between us vanished. I was devastated.’
Doctors advised Tammy to give Wilber time to recover from the brain injuries, but after two weeks, it was found the damage was irreversible.
Recognising how extensively Wilber’s body and mind was suffering due to his complex conditions, Tammy made the hard decision to withdraw her son’s life support.
On the fated day, a team of medics helped the pair move to a private room to say goodbye – which is when the heartbreaking photo was taken.
Tammy recognised how extensively Wilber’s body and mind was suffering due to his complex conditions, and so she made the hard decision to withdraw her son’s life support. Pictured, with son WIlber
The distraught mother held and comforted Wilber (pictured together) as his life support was withdrawn, and took photos of their final cuddles
‘We’d agreed beforehand to take as many pictures as we could,’ explained distraught Tammy. ‘Even though those moments would be so painful to revisit, not having images of every precious last minute with our son would have been infinitely worse.’
Tammy held and comforted Wilber as his life support was withdrawn, taking pictures of their final cuddles, and sang to him and told him not to be scared.
Tammy held Wilber as he took his final breaths and afterwards she was able to spend nine days with her son thanks to a specially adapted cold ‘cuddle cot’ supplied by East Anglian Children’s Hospice.
After moving to the hospice with her son, specialist nurses helped Tammy take prints of Wilber’s hands and feet and saved a lock of his hair.
There, Tammy also took Wilber for a walk in a pushchair, sat on the swings with him in the hospice’s playground and posed for smiling pictures with her son, hiding the sheer agony she was going through.
It was the first time she’d been able to take pictures of Wilber’s face without tubes and wires covering it.
Those photos now take pride of place in an alcove in Tammy and Mark’s home which is dedicated to Wilber. On the shelves, candles burn every day in his memory.
‘Grief for a lost child doesn’t ever lessen but somehow we become strong enough to bear it,’ said Tammy. ‘I miss Wilber so much and there isn’t an hour that passes when I don’t think about what our future with him might have looked like, but I’m so grateful for the 13 weeks and two days I felt my boy’s warmth.’
After Tammy moved to the hospice with her son, specialist nurses helped her take prints of Wilber’s hands and feet and saved a lock of his hair. Pictured, both together
Tammy told how she still does everything she can to ensure Wilber is still a part of her family’s daily life. Pictured, a tribute bench for Wilber
Tammy has an elephant teddy (pictured) with a recording of Wilber’s heartbeat inside, as well as some of his ashes, which she takes on holidays, outings and sets a place for at special meal times,
Now, Tammy is determined to give Zilanne and Wilber a sibling and is dedicating this year to falling pregnant.
‘Before I became pregnant with Wilber, I’d given up on my dream of having another baby and booked in for a hysterectomy,’ she said. ‘ I’m so grateful to Wilber for helping me to realise I shouldn’t give up on that dream.
‘I’m hopeful I’ll be able to bring his little brother or sister into this world and raise them so they know all about their wonderful big brother.
‘I know the picture that recorded my distress so brutally might be upsetting for others to see, but I also know so many people who have experienced the same loss have found comfort knowing they are not the only ones who have felt this magnitude of grief.
She continued: ‘Through sharing this image and others of Wilber’s journey on social media, I’ve connected with many grieving parents and in discussing these experiences, we’ve survived them together.
‘Death is still a taboo subject in society but even more so when it concerns the loss of a child. I am doing my small part to break that taboo so those who lose a child might feel able to talk about their loss as well and find both support and comfort as a result.’
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