Infocefalia is a Parents effort to spread awareness about Plagiocephaly prevention and treatment amongst parents and Doctors. We are located in Spain, Europe.
Our baby's story:
Our baby was born in Dec 2007. When he was 3 months old we noticed he had abnormal head shape. When he was 5 months old his flat head worsen. Through internet search we found out that the helmet therapy can help to solve baby flat head syndrome. We were worried about his condition and we visited an orthopedic. There our baby was diagnosed with positional plagiocephaly with 10mm asymmetry. We were told that it is a mild cosmetic problem but warned if not treated early the flat spot will grow into adulthood.
We had some tough time making up a decision. On one hand we did not want to regret for not correcting the flat head, on the other hand the cost of the treatment was very expensive it was 3800€. At that time we did not have other option. There was not much information and advice on alternative solution. Most of the information was provided by the helmet companies. After struggling for some time we decided to go for it.
Unfortunately the process of helmet therapy was not as smooth as we thought. First was the traumatic experience of casting our baby head shape. Our baby cried and suffered a lot during the casting process.
After 2 months of treatment our baby had dermatitis, redness and broken skin due to the excessive heat and sweat in the summer.
Our baby is 19 months old now and his skull still has some residual asymmetry.
We realized that
: The unpleasant experience of the flat head syndrome and helmet treatment can be avoided If only
- The midwives haves told us about this wide spreading flat head syndrome or
- The nurses in the newborn unit have advised us to rotate our baby's head positions when sleeping or
- The pediatric doctors have checked our baby head shape and encouraged us to provide tummy time.
Unfortunately there was not a single piece of advice being offered. Even up till now many parents are still facing the very same problem.
As a result we take the initiative to promote Plagiocephaly (flat head syndrome) prevention campaign.
The objectives of our campaign:
To encourage pediatric doctors to check and take head measurement for newborn babies. We provide cranialmeter: a simple and accurate head measuring device to pediatric doctors. This device was validated by Dr Costa the leading pediatric neurosurgeon who had more than 10 years of experience in diagnosing and treating baby flat head syndrome. He encourages and recommends all pediatric doctors to play a role in flat head prevention campaign (please refer to Dr Costa's support letter).
To raise awareness among parents by providing useful information leaflets. The leaflets are being distributed via pediatric clinics and well baby centers.
We also set up web sites about flat head syndrome prevention for parents. The two websites are:
Spanish - www.infocefalia.com
English - www.plagiocephalypillow.info
Feedback from physiotherapists and pediatric doctors help us design a safe and effective pillow for pressure relief.
The sales of Mimos pillow is the source of funding for our prevention campaign.
Deformation plagiocephaly prevention campaign
There is a true need to promote deformational plagiocephaly prevention campaign to a nationwide scale because of:
- 1) High prevalence:
There has been a dramatic increase in the incidence of deformation plagiocephaly in infants since the last decade. For example the main children hospital of Barcelona, department of pediatric neurosurgery has been flooded with babies with cranial deformities, among these deformational plagiocephaly (non-synostosis plagiocephaly) make up most of the cases. This has created a very long waiting list for evaluation and treatment. Unfortunately this has lead to delay treatment to the more serious cases like craniosyostosis which is the premature closure of skull suture/s. Craniosynostosis often requires surgery on the skull in order for the brain to development normally. The surgery need to be done as soon as possible.
- 2) Low level of awareness among parents
The head of pediatric neurosurgeon in the main children hospital of Barcelona, Sant Joan de Deu, Dr. Josep Mª Costa commented 40% of the parents of the babies with deformational plagiocephaly come late to seek treatment for their babies. This group of parents have very little knowledge about the problem. The other 40% of the parents are doubtful and not very sure about the problem. Only 20% of the parents seek early treatment for their babies. Most of them have consulted internet and are aware of the problem.
- 3) Significant consumption of medical resources and time.
This growing number of deformational plagiocephaly cases has consumed a significant amount of medical resources and time.
- 4) The possible secondary effect of deformational plagiocephaly.
Deformational plagiocephaly could have possible secondary effect. There is a very limited amount of studies and lack of information about the effects of deformational plagiocephaly on infants' neurodevelopment or other outcomes, perhaps because it has been considered as fairly benign condition. Nonetheless we should not assume that deformational plagiocephaly does not have secondary effect until more evidences have proven so. To be on the safe side the prevention of deformational plagiocephaly from occurring is important and necessary because the possible secondary effects of deformational plagiocephaly may be long lasting and costly to treat.
- 5) Deformational plagiocephaly is preventable
Deformational plagiocephaly is preventable and it responses well to conservative treatments especially when babies are very young in the first 3 months of life. If it is identified and intervened early there is a very high chance of full recovery.
- 6) The target groups are direct and easy to identify
These are parents, pediatric doctors, nurses and midwife.
- 7) Deformational plagiocephaly prevention campaign is effective
The prevention campaign runs by the Hospital de Cabueñes - Gijon Asturias, Spain since 2007 has successfully reduced the incidence of deformational plagiocephaly. This campaign leads to early recognition of the problem by parents, now only 3% of the babies with less than 10mm asymmetry (mild) seek treatment from this hospital.