UPPER DARBY >> Gina Gana gave birth to twin girls, Harper and Hailey, prematurely. The twins, 7 months old on May 13, wear helmets because of a condition called plagiocephaly. The journey of Gina and her husband Lou has led them to find a way to help others creating Helmets4Hope, www.helmets4hope.com.
Plagiocephaly develops when an infant’s soft skull becomes flattened in one area, due to repeated pressure on one part of the head. According to Lou, this condition can go undiagnosed but because of an underlying condition, torticollis, where the neck muscles favor one side over another, the twins were able to be treated. Congenital muscular torticollis is a condition in which the neck muscles are abnormally tight, causing baby’s head to tilt and or turn to one side.
Torticollis often causes the head to be held in a single position, which can lead to plagiocephaly. Other causes include womb position before birth, multiple births, and pre-mature births because the skulls are softer. Because of fear of sudden infant death syndrome, babies sleep for 14 hours on their back — thus flat spots are more prevalent.
“When they sleep and in the car seat, whenever they are on their back, they favor the one side which leads to soft or flat spots in the back of their head because their skulls are so soft and they were premature so they were even softer,” said Lou.
According Gana there are 200,000 newborns diagnosed with plagiocephaly each year.
“We found out through our physical therapist, Jim, who was recommended by our pediatrician. Delaware County Office of Early Intervention had a team come out and access them to find out how much movement they had in their necks, and to see if they could do what a typical 3-month-old should be able to do. Harper had 50 percent motion in her neck, Hailey had 30 percent. We qualified for physical therapy, theraplay. Jim comes every Monday for an hour of intensive physical therapy. We do exercises. Now at 6 months they have almost 100 percent movement. We are seeing great improvement with the physical therapy. Jim noticed the flat spots on the back of their head. At our 4-month checkup they said they have flat spots and to consult with a specialist,” said Lou.
The specialist sent the twins to Lawall and Sons Orthotics, where special helmets were made for them. The twins wear the helmets for 23 hours a day for four to six months. Some children wear it for a year. Some have to have cranial surgery if the head fuses to soon.
“The first two days we weaned them on the helmets. One hour on, one hour off. First day they were sweating profusely and a high fever which is normal. It’s second nature to them. They kind of know when they aren’t on. The hardest part is taking them off at 7 p.m. before their last feeding and give them a bath and put them back on before they go to bed,” said Lou.
The twins go every two weeks to be remeasured and have the helmets fine-tuned.
“Harper was a little crooked slipping towards her eyes and they shave a little off and for Hailey they had to make the ear holes bigger,” said Lou.
The cost of a helmet is $1,800. The Ganas paid $3,600 for the twins’ helmets and insurance did not cover it. With this in mind they decided to create their nonprofit Helmets4Hope to help others who are not able to pay for a helmet.
Infants who suffer from plagiocephaly and do not get treatment when older will have noticeable facial asymmetry poorly fitting eyeglasses, safety equipment and sports helmets, visible flat areas with short or cropped hairstyles, and jaw misalignment.
“We are in a financial situation that we could pay out of pocket. Without talking to the right people we wouldn’t have known who to go to or what to do. Luckily we had a good support system. We are lucky; we have good jobs and good families and friends to support us,” said Gana.
“We found out about other families on Facebook that don’t have the support. We asked ourselves how can we help other families out and decided to start a new non-profit. If it wasn’t for Delaware County Office of Early Invention and our therapist we wouldn’t have known what to do. Our goal is to raise $5,000 and that would pay for three helmets. On our website you can apply for our grant,” said Lou.
“We partnered with a local artist, Nicole Jelena of Cranial Creations and Beyond, who paints one or two helmets a week. Nicole’s youngest son was diagnosed with plagiocephaly. We found her on social media. We are posting on social media about her and she is doing the same for us to get the word out to parents who need help, ” said Lou.
“We have full-time jobs and are full-time parents and taking on this extra task is no easy feat but we know we are doing the right thing. When this journey started we had so many questions and quickly found out how expensive it is to treat. We started Helmets4Hope to be that support system.
The main focus for families impacted by the plagiocephaly diagnosis should be the well-being of their children and not the financial burden. Our goal is to raise money through donations to pay for treatment for these families.
“When Harper and Hailey are in their late teens or twenties we hope they continues on with Helmets4Hope. It’s another task we took on and we are doing the right thing. This isn’t a one-time deal we want our girls to carry on,” said Lou.
For more information or to apply for a grant, go to www.helmets4hope.com.