- Deformational Plagiocephaly
- What causes deformational plagiocephaly?
- Who is at risk for deformational plagiocephaly?
- What are the symptoms of deformational plagiocephaly?
- How is deformational plagiocephaly diagnosed?
- How is deformational plagiocephaly treated?
- What are the complications of deformational plagiocephaly?
- Can deformational plagiocephaly be prevented?
- When should I call my child’s health care provider?
- Key Points About Deformational Plagiocephaly
- Next Steps
- A Tour de Cure | Giving to Johns Hopkins
- Watch highlights from a recent Pedal for Pediatrics event at Ascension Lutheran Nursery School
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Deformational, or positional, plagiocephaly is when a baby develops a flat spot on one side of the head or the whole back of the head.
It happens when a baby sleeps in the same position most of the time or because of problems with the neck muscles that result in a head-turning preference.
Deformational plagiocephaly is also sometimes called “flat head syndrome.”
Deformational plagiocephaly is different from craniosynostosis. Craniosynostosis is when a baby’s skull bones fuse together before they are supposed to. In deformational plagiocephaly, there is no fusion of the skull bones.
What causes deformational plagiocephaly?
When a baby’s head stays in one position for long periods of time, the skull flattens. Sometimes a baby is born with this flattening because of a tight space in the uterus. This risk is often increased if there are twins or multiples. Other things that may lead to deformational plagiocephaly include:
- Muscular torticollis. Muscular torticollis is a problem that is present at birth (congenital). One or more of the neck muscles is very tight. This tightness keeps the baby’s head in the same position.
- Prematurity. The skull bones of premature babies are softer. And many premature babies spend a lot of time in the hospital on respirators with their heads in the same position.
- Back sleeping. Babies who sleep on their backs or in car seats without changing positions for long periods of time can develop flat heads. However, the safest way for babies to sleep is on their back. This reduces the risk for sudden infant death syndrome (SIDS).
Who is at risk for deformational plagiocephaly?
Babies may be more ly to have this condition if they are:
- A first-born child
- Born with the help of instruments. These include forceps and vacuum extraction.
What are the symptoms of deformational plagiocephaly?
This problem may not be noticeable or present at birth. It may develop during the first few months of life. A flat spot may appear on one side of the head or the whole back of the head as the baby grows.
How is deformational plagiocephaly diagnosed?
Your baby’s health care provider will check your baby’s head from all positions. He or she will feel your child’s head, particularly along the suture lines. The provider will also measure your baby’s head to figure out how serious the condition is.
How is deformational plagiocephaly treated?
Treatment will depend on your baby’s symptoms, age and general health. It will also depend on how severe the condition is. Treatment may include:
- Changing your baby’s sleep position by turning the head to the opposite side (repositioning therapy)
- Maximizing tummy time when your baby is awake and minimizing time in infant devices (such as bouncers, swings and car seats)
- Receiving physical therapy to promote symmetric development of trunk and neck muscles
If the problem is moderate to severe and/or the plagiocephaly does not improve much by the time your baby has reached the age of 6 months, your baby’s health care provider may recommend a cranial orthotic helmet. Helmets usually have an outer hard shell and a foam lining.
The helmets are custom made to direct your baby’s remaining head growth into the areas that need the most correction. Helmets are very effective for positional plagiocephaly when fitted and worn properly. The duration of treatment will depend on the severity of the flattening and the age at the start of treatment and will be monitored by an orthotist.
Helmets must be prescribed by a health care provider who has experience with this treatment.
What are the complications of deformational plagiocephaly?
As babies grow and develop, they will move and reposition themselves. This removes the pressure that may have caused the condition. But if the flat spot is moderate to severe, it may not get better on its own. If treatment is not started early enough, your child’s head may continue to be uneven.
Can deformational plagiocephaly be prevented?
This condition has increased since the “Back to Sleep” campaign, which was started to decrease deaths from SIDS and has been very successful. It is important that young babies not be placed on their belly to sleep. This is because they cannot roll over and move themselves. These tips can help prevent a flat head:
- Let your baby have tummy time while he or she is awake and you are watching.
- Lessen the time your baby spends in bouncers, swings and car seats.
- Hold your baby, giving him or her time to be upright.
When should I call my child’s health care provider?
If you notice that your baby’s head is misshapen, or you are worried about a flat spot, have your baby checked by his or her health care provider.
Key Points About Deformational Plagiocephaly
- Deformational plagiocephaly is when a baby develops a lasting flat spot on one side of the head or the back of the head.
- The first steps in treating deformational plagiocephaly are changing your baby’s head position (repositioning), maximizing tummy time and minimizing time in infant devices.
- Some babies may need to wear a cranial orthotic helmet.
- Many cases will improve with conservative treatment alone, provided attention is directed early to the problem.
Tips to help you get the most from a visit to your child’s health care provider:
- Before your visit, write down questions you want answered.
- At the visit, write down the name of a new diagnosis and any new medicines, treatments or tests. Also write down any new instructions your provider gives you for your child.
- Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
- Ask if your child’s condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if your child does not take the medicine or have the test or procedure.
- If your child has a follow-up appointment, write down the date, time and purpose for that visit.
- Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.
A Tour de Cure | Giving to Johns Hopkins
If you’re looking to raise money for a worthy cause, it’s hard to find better ambassadors than tots on trikes.
For the past five years, dozens of preschool students in the Baltimore area have participated in Pedal for Pediatrics, a bike-a-thon to raise funds for the Division of Pediatric Oncology at Johns Hopkins’ Sidney Kimmel Comprehensive Cancer Center.
The program is the brainchild of Margy Hooper, a member of the division’s Pediatric Oncology Advisory Council and a teacher at Baltimore’s Redeemer Parish Day School. For years, the school had participated in a fundraiser for St.
Jude’s Children’s Hospital, but some of the staff — including Hooper — saw a need closer to home.
“If any child in our school were to be treated for cancer, they’d probably go to Hopkins,” says Hooper, whose son was treated there for osteosarcoma. “Then we had a student who had retinoblastoma and another who had leukemia. We said, ‘This has to be done for our local hospital.’”
Watch highlights from a recent Pedal for Pediatrics event at Ascension Lutheran Nursery School
Redeemer’s Pedal for Pediatrics event includes three parts. The students — age 3 through pre-first-grade — “ask” for pledges from their families.
They attend an educational session about what cancer is and how it can affect children just them.
They read the book “Alex and the Amazing Lemonade Stand” and talk about how the money they’ve raised will help doctors make children facing cancer feel better.
“The kids understand, and some of them are really affected by it,” Hooper says. “We’ve had parents tell us their children will come home and want to talk about what they learn.”
Finally, there’s the action: The children bring their bikes, trikes, and scooters — and, of course, helmets — to school, then line up with their class on a track created by chairs and caution tape. After a bike safety lesson, they set off, cheered by parents holding coffee cups in one hand and cameras in the other. After the short ride, the students enjoy an ice cream party.
“Our parents love it because it’s quick, it’s meaningful, and it doesn’t put any of them work for very long,” Hooper says.
“We obviously feel lucky that our son got through [his cancer treatment], but in some cases, they’re treating cancer the same way they did 40 years ago,” Bill Hooper says of his and his wife Margy’s motivation for supporting pediatric oncology research.
The first Redeemer Pedal for Pediatrics was so successful that Hooper and the school’s director, Mary Knott, invited other area nursery schools to join.
The duo developed a package of resources — templates for emails, pledge forms and permission slips; a week-by-week planning timeline; and best practices for course setup — that makes the event turn-key for the schools.
In recent years, McDonogh School, Grace Preschool, St.
Paul’s Plus, Ascension Lutheran Nursery School, Garrison Forest School, and Trinity Episcopal Preschool have joined Redeemer, and Hooper says three more schools have voiced interest for 2020 events.
The Pedal for Pediatrics series raises about $30,000 annually for research initiatives in the Division of Pediatric Oncology at Hopkins, says Advisory Council Chair Bill Hooper, Margy Hooper’s husband.
“We obviously feel lucky that our son got through [his cancer treatment], but in some cases, they’re treating cancer the same way they did 40 years ago,” Bill Hooper says, adding that faculty members often speak at council meetings about their research. “We hear about how they’re so close to breakthroughs — they know “this,” and they know “that,” but they need to find the connection between the two.”
Private philanthropy is central to helping that connecting work get done, says Don Small, director of the Division of Pediatric Oncology. Only four percent of the billions of dollars spent on cancer research each year goes toward pediatric oncology research.
“Pediatric cancer is the top cause of childhood death,” Small says. “Research is the only way we can improve outcomes for children, increase the cure rate, and decrease the side effects of treatment. The things that come our laboratories end up being translated into new protocols.”
Although his faculty apply for and often receive funding from the government and large cancer-focused foundations, gifts those from Pedal for Pediatrics ensure promising research can continue regardless of funding gaps. Such funding is currently supporting research on immunotherapy, targeted therapy, new approaches to bone marrow transplants, and some clinical trials, Small explains.
Increasing philanthropic support for this work at Hopkins means educating and inspiring more donors to get involved. That makes programs Pedal for Pediatrics — and leaders the Hoopers — so important to Small, his team, and the Kimmel Cancer Center.
“Even when you look at some of the [pediatric cancer] cures, they come at a large price for a lot of these kids, in short- and long-term side effects.
We need ambassadors to get out there and show the rest of the community the importance of this research and help raise additional funds,” Small says.
“Bill and Margy have done a very special job in the short time they’ve been leading the council, and we’re so grateful for the amazing work they’re doing.”
Header photo by Chris Barbalis via Unsplash