Maleigha Barrett
Maleigha Barrett was born November 4, 2006, two weeks early, weighing 5lbs. 7.3oz. She was the first born daughter of James & Kim Barrett. Kim’s pregnancy was normal aside from extreme nausea. Maleigha’s delivery was fast since she was such a small baby. Soon after birth Maleigha did not pass the newborn hearing screening. She was rechecked and had the same result. The family was referred to Randall’s Children’s Hospital for further ABR testing and at 3 weeks of age Maleigha was diagnosed with bilateral hearing loss. This was devastating to a young family, but they were prepared to get her the help she needed.
At her 3 month Well Child Check it seemed Maleigha wasn’t meeting her milestones. The physician was wanting to hold off a few more weeks, explaining that some kids hit milestones at different times, but Kim’s gut told her that something wasn’t quite right. They were able to get Maleigha into a local pediatrician for a second opinion. Right away the doctor was concerned with her head circumference and the spasticity in her limbs. This combined with her hearing loss was even more concerning.
The Barrett’s were referred to Emanuel Legacy, but it took 3 months to get in to see them. Maleigha’s appointment landed on the date Kim & James had picked for their postponed Honeymoon and Grandma Karen offered to take Maleigha so they could go. The couple had no idea Maleigha would be diagnosed with Quadriplegic Cerebral Palsy (CP). It was a day and diagnosis that forever changed their lives. It is very rare for a child to be diagnosed so early, but the doctors recognized all of the signs, the drive home was hard on both of them.
After the diagnosis of CP the Barrett’s were thrown into a whirlwind of appointments with different specialists and multiple therapies each week. When Maleigha was 9 months old they met with a neurologist who scheduled her for an MRI. Maleigha was diagnosed with Pachygyria (Pachygyria is a developmental condition due to abnormal migration of neurons in the developing brain and nervous system). Basically Pachygyria means that the brain is smooth with very few folds or wrinkles which decreases the surface area. The cause of Maleigha’s brain disorder is unknown, but a genetic specialist who studies brain malformations told the Barrett’s it was most likely caused by a Cytomegalovirus during Kim’s pregnancy. Unfortunately Maleigha’s blood spot card at birth was destroyed by the state one year after her birth, so they were unable to use it to help in the diagnosis. Between the medical needs and the appointments, the family decided it was better for Maleigha to have a parent at home and Kim has been home with her ever since.
The Barrett’s were told not to expect much improvement in Maleigha ‘s overall condition and that she would likely start having seizures. They were told that she will need to be medicated for the rest of her life. At that time Maleigha appeared to be a healthy infant. If anyone saw her, they wouldn’t be able to recognize any kind of disability.
At 18 months old, Maleigha had her first surgery to help with the hearing loss. Watching their young baby have brain surgery was extremely difficult. Maleigha’s Cochlear implant surgery was successful in her right ear, but as the surgeons were moving forward they noticed abnormalities in the anatomy of her ear that the MRI and CT didn’t show. Unfortunately the surgeons were unable to fully implant electrodes in her left cochlea; only 11 out of 22 electrodes were implanted. Maleigha was the first child in the state of Oregon to have bilateral implants placed.
In time, the implants healed and it was time to activate them for Maleigha to hear sound. Many people watch cute videos of babies hearing for the first time, which are usually followed with lots of smiles and cooing. This was not the reaction the Barrett’s received. Maleigha was terrified; a pouty lip was followed by tears of fear. The audiologist worked for several years programming her Cochlear implants until they were comfortable for Maleigha.
At age 6 Maleigha seemed to be responding to the sounds around her, but it wasn’t until age 11 that she started getting excited to put the sound processors on every morning. When they are off her head she has no sound sensory and is completely deaf. However, when they are turned on in the morning Maleigha throws her arms up and smiles in excitement. The family says her reaction makes it worth the wait, it is pure joy.
Maleigha has struggled to maintain her weight and stay hydrated. Even with occupational feeding therapies and feeding clinics Maleigha’s oral muscles weren’t strong enough to eat solids safely. Every time Maleigha was sick she would end up hospitalized for IV fluids. At age 3 Maleigha was hospitalized with H1N1 and the doctors recommended a Gastrostomy tube be placed to help with hydration and nutrition to keep her out of the hospital. This was her second surgery. Not long after this, Maleigha started having seizures and as predicted, was put on several medications to treat them.
After her weight stabilized and as she got bigger the doctors suggested the Barrett’s look into an adaptive stroller or wheelchair for Maleigha. Kim didn’t feel Maleigha was too big to carry around, but the family did want her to have freedom of movement and independence. Maleigha’s younger sister Makenzie was born only 13 months after Maleigha and also needed cared for.
Thanks to her low weight Maleigha stayed in a car seat for quite some time and the family was able to load her wheelchair into the trunk of their van. Knowing this wouldn’t last forever, the family made the decision to purchase a wheelchair accessible van from a local dealership. They put many miles on the van to and from Maleigha’s appointments in Portland. Maleigha loves car rides!
Maleigha’s third surgery was a bilateral hip surgery when she was 5 years old. With CP there are many issues with hip dislocations and other orthopedic issues due to the spastic muscles and not having the ability to walk. The hip surgery left her in a Spica cast for 8 weeks, which put her in a partial laying down position. Even bringing her home would have been impossible without a wheelchair accessible van. Plus Maleigha was now a size that required the family have proper transportation in order to protect their backs and give Maleigha the care she will need for a lifetime.
Sadly, this would not be Maleigha’s last surgery. At age 11 Maleigha had spinal fusion surgery to correct a significant curve in her spine. In spite of all the surgeries and hurdles in her young life, Maleigha has kept a smile through it all. She has found joy in places one would not expect and that brings the family happiness. The spinal surgery with all the new rods and screws was by far the toughest as it is was no longer safe to move Maleigha the way they used to.
Their first accessible van lasted many years until the mileage was so high that the motor started going out. The van was costing the family a lot of money and was not safe or reliable. Kim’s grandmother, who was also in a wheelchair passed away and left the Barrett’s her wheelchair accessible van. It has was great for a few years, but unfortunately it also had high mileage and started costing the family a lot of extra money.
A new wheelchair accessible van can cost between twenty to eighty thousand dollars. It seems as if every time the family starts saving money to put towards a new van, something breaks down in their current van. Many many times the Barrett’s have been left without a vehicle and have had to borrow other vans from neighbor’s and friends in order to take Maleigha to her appointments.
On June 26th 2021 The Barrett’s found themselves sitting on the side of the I-84 by Multnomah Falls without a transmission. It was a very scary experience. Thankfully that morning Maleigha wasn’t stranded with them.
The Barrett’s made the decision to use what was left in their savings to repair the transmission on the van. On Saturday July 31st, Kim was driving her mother’s vehicle on her way to pick up the van when she was struck from behind at a stop light of 6th and Webber. Thankfully Maleigha and the family were not with her yet and no one was injured.
The Barrett’s are now sharing Maleigha’s van with her mother until her vehicle can be repaired. When Kim picked up the van from the transmission shop the mechanic informed her that the brakes and alignment needed to be done as well, which is on top of the ongoing electrical issues still needing repair. The old van has become an money pit.
Maleigha will be a Freshman in High School this year and plays on the Challenger Baseball League. She loves her Cartoons, Trolls Toys and anything that’s fast and adventurous. Maleigha has the best smile and laugh you can imagine and especially lights up when she is around her family. Maleigha loves going for drives, especially since Covid required her to be isolated for her safety. The one thing Maleigha looks forward to is getting out of the house and going for a drive.
The Barrett’s hope to take Maleigha to the Salem Carousel once the pandemic improves and she can get back to her regular scheduled therapies. Maleigha especially loves her pool therapy and she loves going to watch Makenzie play sports.
The Barrett’s feel honored to have been chosen for this year’s Pigbowl and are super appreciative of the local businesses, law enforcement, community, friends and family that are willing to help get Maleigha a reliable vehicle that will fit her needs.
Additional Fun Fact…
The Barrett family was nominated as a potential Pig Bowl Recipient in 2019 and were not selected. In 2021 the Barrett family was nominated again before any announcement went out that a Pig Bowl would even be held. Once the announcement went out to the community and we began soliciting potential Pig Bowl recipients, Maleigha Barrett was nominated three more times!
Below is an excerpt from one of the nomination emails…
Thank you for supporting so many families in need. With that said, it is with pleasure I am writing on behalf of James and Kim Barrett asking for assistance with transportation for their special needs daughter, Maleigha.
Both James and Kim grew up in The Dalles and are productive members of our community. They have supported The Dalles for many years. Their second daughter attends the Middle School and participates in local sports as well as traveling team softball. Maleigha enjoys attending these games and time spent with family and friends. However, Maleigha was born with severe Cerebral Palsy and Pachygyria, thus excluding her from participating. She is 100% wheel-chair bound with constant assistance in daily life, including breathing when mucus is involved. She is non-verbal but slowly learning picture recognition and gurgling/smiling cognition skills. She is happy. She loves the Seahawks and being outside. Her family is proud of her.
Due to conditions beyond their control, this past week on the way to a softball game, their conversion van broke down. The transmission went out. This is Maleigha’s only mode of transportation. Any doctor visit, therapy session, family drive to get out of the house and experience the outdoors came to a halt. The van needs to be totally replaced as Maleigha has aged and an old van will continue to break down. James and Kim are in desperate need. They have solicited their extended family for help. They still need additional assistance.
The larger the down payment for a Conversion van, the lower the monthly payments. The base price for the van ranges between $35,000 to $58,000. Then you need to add the needed equipment for Maleigha. The base cost is $20,000 to $60,000. Added together it’s out of range for most young parents. (ok, me too). If you can support the Barrett family in their purchasing a van for their daughter, it would be more than appreciated. They’re looking for a sizeable down payment so they, and if needed, parents, can make the monthly payment. Please consider this family for any contribution you can provide.
Thank you for considering Maleigha and her family as recipients of the Pig Bowl fund-raiser. If you need more information or have questions, please contact me.
Well Maleigha, we will certainly give it our best shot!
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