The mother of two-year-old Brennan Tapani has an unwavering message for parents of children with one of the most severe forms of osteogenesis imperfecta.
“I wish I would have known when I was pregnant how special and amazing and how much we love him now. We honestly feel lucky and blessed to be Brennan’s parents and have him in our life. I honestly think we’re luckier than people who have all typical kids because Brennan brings such a depth of love that you just can’t imagine without having a child with a disability. You just don’t even know.”
There was no family history of OI prior to Brennan’s birth. The Tapanis have two older children: four year-old Rudy and three-year old Hans, and now a two-month old daughter, Della.
Betsy and Clayton Tapani knew mid-way through Betsy’s pregnancy with Brennan that he would be born with severe medical issues. A mid-term ultrasound at 19 weeks showed abnormally small and bowed femur bones, with the possibility of a fracture in his femur. Two subsequent ultrasounds at six-week intervals confirmed that little Brennan had fractures in all his long bones and, later, fractures in all his ribs. The last ultrasound did not rule out lethal OI.
“We really didn’t know how to plan for his birth. We had a horrible fear that he wouldn’t even survive,” Betsy recalls.
Despite plans for a scheduled delivery, Brennan came early. He was born at 37 weeks with four new fractures—one in each arm and leg. He began his first intravenous infusion of Pamidronate, a medicine used to strengthen bones, decrease pain and reduce fracture rates, at five days old.
Fortunately, their doctor was very familiar with the symptoms of osteogenesis imperfecta, having had a child of her own with Type IV OI. But her message to the Tapanis was anything but encouraging.
“She told us that Brennan’s condition was so severe—because of his accordion-shaped bones—that she’d be ‘shocked’ if he survived past the newborn period. Everything she told us had such a negative slant that it was overwhelming.”
Additionally, because of Brennan’s ‘pigeon-shaped’ chest, their doctor strongly advised that he never be put on a ventilator. Once he was on, she predicted, he would never be able to come off.
Brennan spent the next 17 days in the Neonatal Intensive Care unit of Minneapolis Children’s Hospital before going home.
At one-month he came down with a severe, cold-like virus known as respiratory syncytial virus (RSV). RSV affects approximately 125,000 children each year in the U.S. and is the most common cause of respiratory tract infection in children under five years of age. It can be particularly serious in infants born prematurely and children under the age of two suffering from chronic lung conditions. Infants born at less than 36 weeks gestational age are at significantly elevated risk for severe RVS disease, according to the Centers for Disease Control and Prevention.
Brennan had a very gray, almost ‘dusky’ color when he was sent by ambulance and readmitted to the hospital. He was treated by a pediatric intensivist and pulmonologist, Dr. Stephen Kurachek, who put him on a ventilator that evening, a move, based on their earlier understanding, clearly stressful for his parents. However, the doctor assured the Tapinis that despite Brennan’s OI, his RSV was manageable and that he was “no worse off than any other kid with this condition.”
Brennan spent the next 16 days on a ventilator.
“It was just too much for me to take knowing the previous warning our doctor had given us about putting Brennan on a vent. We were just sitting there waiting for him to die. But he just breathed and didn’t die. He came off the vent and did just fine. Obviously God had a different plan for Brennan. I knew then that he’s going to be here as long as he’s meant to be. I finally allowed myself to enjoy him,” Betsy remembers thinking.
That Christmas, Betsy sent a Christmas card to the doctor who delivered Brennan with a hand-written note updating her on his successful experience on the ventilator.
The following months presented both challenges and rewards. Brennan was on oxygen, continued shots to prevent recurring RSV and wore a helmet beginning at seven months to help shape his head.
He continues receiving Pamidronate treatments every eight weeks at home now with the aid of a visiting nurse. Those treatments, Betsy believe, have had definite results.
“The Pamidronate has been amazing. Every time he had a treatment, a few days afterward, he would do something new he wasn’t able to do just days earlier. It was so obvious to me that it was the Pamidronate.”
Brennan also gets weekly physical therapy in the home through the federal early intervention/birth to three year-old program as well as a session at a local therapy center.
Respiratory complications continue to be a problem for Brennan, but with the help of his pulmonologist, the Tapanis have learned to manage them successfully at home.
This past September, Brennan had both upper arm bones rodded at Omaha Children’s Hospital by Dr. Paul Esposito, an OI Foundation Medical Advisory Council member. This past January, Brennan returned to Omaha to have Fassier-Duval (F-D) rods placed in both femurs and both tibias at the same time.
“Brennan had such good success with his arms rodded that we’re really excited to see what he’ll do with his legs. I just want to give him every chance to walk; if he doesn’t, that’s OK too,” she says.
His Swedish-made manual wheelchair allows Brennan to get around just fine, according to his parents. At only nine pounds, it is half as light as the lightest wheelchair made in the U.S, they point out.
He gets up in the morning, eats breakfast and says ‘on wheelchair, mom,’ then he’s off to find books, play with his toys or turn the wheelchair in circles singing ‘ring around the rosy,’ says his mom.
“He seems smarter than other kids his age, and I honestly think he kind of is…because he has so little use of everything else in his body that his brain is extra smart.”
Brennan travels with his parents once a year to Omaha for an OI clinic where they are able to connect with other families. Coincidentally, Betsy recently learned that the clinic researchers there are considering conducting a study to test the theory that children with OI have higher intelligence than typical children.
“And I totally think they do,” she laughs.
The first months of Brennan’s life were overwhelming, “really terrible” for the family, but finding support within the OI community was a “lifesaver.”
The Tapanis sought support even before Brennan was born. Betsy’s aunt had a sister-in-law whose child was OI Type I, and she encouraged Betsy to sign on to the Yahoo OI Parents site.
“I can’t even tell you how much these parents have helped us. I know we wouldn’t be in the positive place we are in today without their amazing support.”
Clayton, Betsy and five-month old Brennan all attended the 2010 OI Foundation National Conference on OI in Portland, OR where they participated in a sharing session for parents with children with OI from birth to five years old.
“It was our favorite part of the Conference. Everyone shared their stories, cried and learned so much from each other. It was very neat to be among parents who could relate,” she recalls.
Brennan celebrated his second birthday with his family a few weeks ago.
Betsy wanted to share Brennan’s story to continue the support her family received before Brennan was born and afterwards.
“That’s the biggest thing for me, to help other families know what a gift they’ve been given.”
“If I could be of help to just one person who’s expecting a baby with severe OI…if they could see Brennan and think ‘oh, look he’s so cute’…because when I was pregnant all I could think about were the problems ahead, and I didn’t want to do it. I had selfish feelings. I didn’t want him to be in a wheelchair. I didn’t want to have to deal with broken bones all the time…and I didn’t want to think of him not being able to walk and being so little.”
“And now I look at all those things I thought were so bad, are actually not bad at all.”
“I’ve never been so happy then I was the first day I put Brennan in his wheelchair and he went all by himself and into the kitchen and started digging in the drawers. And here when I was pregnant, I was so depressed he even had to have a wheelchair,” she laughs.
Brennan has experienced just about every symptom of severe OI in his two years. But none of that matters to the Tapanis. He’s just ‘the cutest little boy’ who just happens to have OI.
Betsy welcomes parents with children with severe OI to email her with any questions or concerns at firstname.lastname@example.org. She is excited to offer support and “pay it forward.”