Showing posts with label atrioventricular canal defect. Show all posts
Showing posts with label atrioventricular canal defect. Show all posts

Friday, December 7, 2012

Ohio baby receives 400 ornaments from around the world




by Holly Richards from Newark Advocate.com:
His eyes bulging, taking in hundreds of colorful ornaments adorning a bright Christmas tree, Sebastian Longstreth extends his tiny fingers to a glittering red bulb.
“None of our ornaments are on there — they’re all his,” said Shannon Longstreth, Sebastian’s mother.
For the past month, 11-month-old Sebastian has been receiving hundreds of Christmas cards and ornaments from around the country and world.
“His Facebook page has 7,829 ‘likes,’ and everybody was asking what to get him for Christmas,” Longstreth said. “I thought we should give him his own tree, and ask people to make, buy or take ornaments from their trees to send. There are a lot of handmade ones, and we have close to 400 now. We’ve even started hanging them on the banister.”
Longstreth said local people are giving, and mailboxes are filled to the brim daily with gifts from every state. International packages have been received from England, Ireland, Australia and other countries.
This is another example of support the Longstreth family has received, even before Sebastian was born. On Jan. 23, Shannon and her husband, Brandon Longstreth, welcomed their third child. She was five months pregnant with Sebastian when a blood test revealed he had Down syndrome.
“I wasn’t shocked about the Down syndrome diagnosis, but it was the heart issues that bothered me,” Longstreth previously said. “That was heartbreaking. He has an atrioventricular canal defect, but he’s had surgery, and it looks great. He’s a fighter. I don’t treat him like he’s ‘special.’ I treat him like a baby.”
After Longstreth uploaded photos to Facebook shortly after Sebastian was born, they quickly received 112 “likes.” She started the Sebastian’s Journey page on Facebook, which had 82 “likes” in 15 hours. Now, he’s up to almost 8,000 “likes,” from a mix of familiar faces and strangers.
“The public’s been great, and I pay attention to people I receive messages from,” Longstreth said. “I try to recognize them and respond to them all. These people really support me, and one — Phillip McCloud — gave us a new refrigerator. Without social media, I’d be lost. It’s amazing to have someone out there who is concerned about us.”
Facebook also has given Longstreth her “guardian angels,” Dona “Mimi” Joseph and Kelly Treadway. They started out as strangers who happened to live nearby, and now there’s almost no one Longstreth feels closer to. Each followed Sebastian on Facebook and reached out to Longstreth, wanting to be involved in the child’s life.
After Joseph’s husband died in July, she questioned if she would find love again. A month later it came in the form of young Sebastian. Joseph and Treadway have become daily visitors who sit with him so Longstreth can tend to her family and herself, giving her respite from Sebastian’s around-the-clock care.
“It’s a different world,’ Joseph said. “He’s a godsend to us. He was meant to come into my life when he did.”
“We’re here to help with whatever they need,” Treadway said. “I feel like he’s my grandchild, too.”
Angela Smith, a home nursing caregiver with Maxim Healthcare, of Newark, is at the Longstreth home 40 hours each week to assist with Sebastian’s needs. She already has seen him make great strides and looks forward to many more.
“He’s a remarkable client, so strong and happy,” she said. “He has the potential to get better. Being here gives me a sense of purpose, and this family has become my family.”
As Sebastian rested comfortably on Joseph, Treadway and Smith helped Longstreth open mail and hang the ornaments that continue to pour in. They are floored by the response so far.
“I feel the love on this tree,” Longstreth said. “He really is Zanesville’s baby. He’s touched so many people.”
hrichards@centralohio.com
740-450-6772
Twitter: @hmrtr

Monday, January 2, 2012

a mother's prenatal bond - “I already loved him so much.”


from NWF Daily News by Kari C.Barlow:

Mallory Griffin’s hands move confidently as she settles her wriggling 4½-month-old baby boy in her lap.

She snuggles him close to her heart, careful not to tangle his feeding tube. Kai calms immediately, his dark eyes fixed on her face.

“Before Kai, I had never changed a diaper,” she said with a laugh. “I was horrible with children.”

Now, the 24-year-old is raising a baby with numerous special needs largely on her own. Her husband, Mulan, is an explosive ordnance disposal technician stationed in Afghanistan.

Griffin, who lives in Bluewater Bay with her mother, has known since the early months of her pregnancy that her son would have extra challenges.

“It was at 18 weeks,” she said. “We were going in to find out the sex … and they were having trouble seeing the other side of his heart.”

Diagnosed with Down syndrome, Kai was born six weeks early on July 15 with an atrioventricular canal defect that allows extra blood to flow from the heart to the lungs, which overworks both organs.

Within days he was flown to Children’s Healthcare of Atlanta, a leading pediatric hospital. Griffin traveled up with family to be near Kai, who eventually was strong enough to have heart surgery Oct. 13.

“Learning to get used to living in a hospital room, that was hard,” she said. “I connected really closely with one of his nurses … and that really helped.”

Sitting on the couch in her mother’s living room, Griffin lifts Kai’s shirt and marvels at the barely visible scar on his baby-smooth chest. He gives her a chubby smile as she pats his tummy.

“It just puts into perspective what’s important,” she said, admitting with that she often just sits and stares at him. “He’s everything now.”

Griffin, a tall blonde with a quick smile, is often amazed at the turn her life has taken in the past year. Before getting pregnant, she was partying her way through Florida State University.

Now, she has a baby in her arms, one who cannot yet suck on a bottle, whose lungs are still healing and who takes several different medications each day.

Her friends tell her she’ll eventually need a break from it all.

“I don’t ever want to take a break,” she said. “It’s amazing. I’m happy sitting on the couch with Kai.”

Griffin finds it hard to believe that not long ago, during the weeks following the Down syndrome diagnosis, she was given the option to terminate the pregnancy.

She never considered it.

“It didn’t matter to me,” she said. “I already loved him so much.”

To combat the constant worry, she educated herself about Down syndrome and what lay ahead. She also relied heavily on her parents, Phillip and Alyson, for support.

But caring for Kai hasn’t been easy. He was on oxygen when he first came home from Atlanta. It’s gone now, but the feeding tube remains, and he must have a pre-digested formula every three hours.

“He’s on a lot of medications to keep everything running smooth,” said Griffin, who travels to Pensacola for Kai’s doctors appointments. “I’m just happy that he’s alive.”

She says the holidays will be sweeter this year because Kai is part of the family.

 “I just want to spoil the heck out of him,” Griffin said. “It’s going to be a great Christmas.”

She and other family members, all University of Florida fans, are happily filling up his nursery with memorabilia.

“He has a huge gator collection, so he can have a swamp in his room,” Griffin said.

As Kai continues to grow and improve, she finds herself excited about his future.

“It’s just going to be different (from what I once thought),” she said. “He just blows my mind every day.”

If Kai is stable enough, Griffin wants to move back to Tallahassee next year to finish her bachelor’s degree in studio art. She’s even considering a career in nursing.

“I feel like he’s made me a complete person,” she said. “I need to be the best for him.”