The parents of a baby named Robyn, who was born very tiny at just 11 ounces (328 grams), have finally brought her home after 18 months in the hospital.
Robyn was born five months early in March 2023 at Grange Hospital in Cwmbran, Torfaen, and she still needs special care all the time. Her parents, Chantelle (34) and Daniel (38) from Malpas, Newport, are raising money for her treatment. Chantelle said, “It’s like a dream come true to have Robyn home.”
Robyn was born at just 23 weeks and 2 days and was so tiny that she could fit in the palm of a hand. To keep her organs warm while she grew, she was kept in a sandwich bag.
After six months in the hospital, she spent another seven months in the pediatric intensive care unit at Noah’s Ark Children’s Hospital in Cardiff. She then returned to Grange Hospital until she was finally discharged in September.
Chantelle, who works part-time as an accountant, said, “It’s just so nice to do normal family things… and just all be together under one roof.”
Daniel, a self-employed bricklayer, mentioned that it’s much less chaotic at home now. He has had to cut back on work to focus on taking care of his daughter.
Robyn gets oxygen and nutrition through tubes in her nose and mouth, and her vital signs are watched all the time. She takes 30 doses of medication each day.
Her mom, Chantelle, explained, “She can’t cough, so we have to suction her mouth and nose throughout the day when she needs it.”
Daniel described Robyn as doing well and enjoying the “peace” of being at home. He added that they do a lot of physical therapy and play with her to help her senses.
Chantelle said it was tough to bond with Robyn in the busy hospital ward, with doctors and nurses always coming in and out.
“All you can do is sit next to her and watch,” she explained, “keeping an eye on the numbers on the screen and hoping she will be okay.”
“When Robyn was born, we weren’t sure if she would survive.
“As time went on, she grew bigger and stronger, but she still faced many problems. It became clear that her brain damage would have a big impact on her.”
‘We know nothing is impossible’
“We didn’t learn about her brain damage until about six months after she was born,” Daniel said.
“You have all these plans for how life will be, and then everything changes,” he added.
“But we try to stay positive.
“We know that nothing is impossible for Robyn because she has been told so many times that she wouldn’t be able to do things or even survive, but she keeps proving everyone wrong.
“She’s full of surprises, and I believe she will create her own story.”
Parents say goodbye to their newborn as life support is switched off, then he starts breathing immediately
Most moms will agree pregnancy and labor can be a scary time and all you want is to deliver a healthy baby, kicking and screaming.
But one mom was faced with the unthinkable when her baby boy was born with medical issues that left him on a ventilator.
Lisa Hough shared an image of her sweet baby grandson born to her daughter Chelsea and also shared the unthinkable tough decision that her daughter had been faced with.
The mom of three and nana of two said her grandson Karson had been born with many medical complications.
“The only way to describe what has happened is that this beautiful baby boy has suffered two very rare traumatic conditions that are completely unrelated to one another,” Nana Lisa shared on her Facebook page.
She added her newborn baby grandson had suffered a “hemorrhage in the left temporal lobe” and had also been diagnosed with a rare, genetic, metabolic disorder called Non-ketotic hyperglycinemia (NKH).
“His case is presented as severe and would cause him to be severely neurologically impaired – functioning at a 2-3 month old level at best for his lifetime,” Lisa wrote.
His mom, given all the information from the medical staff around her, made the incredibly tough decision to take him off life support.
Lisa wrote of the heartbreaking moment they had to say goodbye to their sweet little one.
“While we weren’t ready to say goodbye to Karson, we had come to terms with the inevitable. We were given 10 minutes after withdrawing intensive care and the ventilator and told he would not breath on his own and to expect his heart to stop within those 10 minutes.
But, according to Lisa, it seemed “God had other plans” and said she and her daughter witnessed a miracle.
“He immediately started breathing on his own once the ventilator was removed, heart rate and oxygen stabilized, and here we are 5 hours later with this miracle baby that we were told would never breath, swallow, have gag reflexes, or even survive. He is breathing unassisted.
“He is swallowing. He is surviving. He even has slightly opened his eyes a couple times today.”
She said his doctors had no explanation for what happened saying no medical or science data supports this little fighter surviving; the only explanation they have is that it’s a miracle.
“I’m not sure why I ever thought we were so underserving of a miracle…and I’m not sure how long we have with him, but we have him now. And now we will take,” Lisa wrote.
Finally, on March 1, she and her family were given the joyous news that their tiny bundle of joy would be coming home that week.
“Every day, I am brought to my knees, and just when I think God is done, I am quickly reminded that he isn’t….I have no words for my gratitude and I will praise Him for as long as I have air in my lungs for giving Karson his,” Lisa wrote.
From her very first post, commenters were fully supportive of the journey, celebrating the survival of Karson with more than 30,000 reactions to the post announcing the wonderful news that Karson survived and is thriving
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