Hip Dysplasia: Caring & Coping

Hip dysplasia, also referred to as developmental dysplasia of the hip (DDH), is widely believed to be developmental. I am not an expert on this subject, but thankfully there are those who are experts, and that is where I turned when I wanted to know more.  The International Hip Dysplasia Institute (IHDI), which started in Orlando, Florida is on a mission. Their board of doctors, researchers and supporters are committed to providing the best information and care for, “children and adults affected by neonatal hip instability and developmental dislocation of the hip.”[1] They are an international non-profit organization started to educate parents and physicians about hip dysplasia.

The exact cause(s) are not known; however, it is known to develop around the time of birth, after birth, or even during childhood. It is believed that infants are prone to hip dysplasia for a variety of reasons:

1. Hip dysplasia is approximately 30 times more likely when there is a family history.

2. The baby’s womb position can increase pressure on the hips. Babies in the breech position are more likely to have hip instability than babies in a normal womb position.

3. The bones of an infant’s hip joint are much softer than an adult hip joint.

4. Infant positioning during the first year of life.[2] 

If hip dysplasia is not seen at birth, it is important for parents to recognize the signs over the next year. You, as a parent, are often the first ones to notice something out of the ordinary. Remember you are your baby’s advocate. Signs to look out for are:

Asymmetry
Looking at the buttock crease will often show you if there is asymmetry. Your doctor will follow this up with an ultra sound or x-ray. (I’d forgo the x-ray if possible and request the ultra sound)

Hip Clicks

Limited Range of Motion
This might be noticed while changing diapers. Often babies with hip dysplasia can’t fully spread their hips.

Pain
Not normally felt in infants, pain can be a symptom of hip dysplasia in adolescents and young adults.

Swayback
This is an extreme curvature of the lower back with or without a limp when walking.

At birth, hip dysplasia is diagnosed through a variety of tests. The doctors check the hips, and if there are any factors that increase the possibility of risk, such as:

  • Baby is a twin or multiple, or was in a breech position at birth.
  • Family history of hip dysplasia.
  • Concern about the results of the physical exam.

The doctor will recommend an ultra sound and follow up exams.

The treatments for DDH vary. Most babies treated under six months, are braced in a way that keeps the hip joints open. The two most common practices are:

The Pavlik Harness, a harness that is specially designed to gently position the baby’s hips in a well-aligned and secure position, and hip abduction braces, which are smaller and used for children who are beginning to move around.

Even if a baby is not diagnosed at birth, it is still important to consider the best way to prevent its occurrence. Certain ways of swaddling a baby can actually cause hip dysplasia. A baby whose legs are held straight, as in the papoose boards used by some cultures, and tight swaddling for extended periods, have high rates of hip dysplasia. Cozy is one thing, but babies need to be made cozy in an open legged position to ensure the best protection. Notice how a baby or even adults legs splay out naturally when they are relaxed, or asleep. This position is best. Tight swaddling of infants can cause their loose hips to move upward and away from the socket. There are a variety of methods for swaddling a baby, but the only safe way is to make sure that there is room for the hips to move. Keeping the blanket loose enough at the bottom is the best way to ensure that freedom.

Carry Baby in an Open Legged Position

When carrying the baby in an upright position, the baby’s hips should always be straddled around the wearer’s body. The legs should be pulled up at a 90-degree angle. This is only possible if the carrier crotch piece is wide enough so that it will reach the hollow of the baby’s knees. The legs are pulled up to support the baby’s body and balance. When the baby’s knees are pulled up to a 90-degree angle, the baby’s legs are spread between a 90 and 120-degree angle around the wearer’s body. This agrees with the baby’s anatomical make up and supports proper hip development. According to research by Dr. Jeffrey Hull, the best hip and hip joint position is with the knees up and away from the centerline, also called the frog leg position.[3]

All of this information is readily available to anyone seeking to know more. What I wanted to know was what it was like to experience having a baby with this issue. In our neighborhood there is a woman named Maria, whose daughter was born with two clubbed feet. Although it is different from hip dysplasia, there are many day-to-day issues that parents would have to deal with that are similar. She agreed to allow me to interview her; talk about some of the commonalities of having an infant diagnosed with a medical issue, and how that affected her experience with her baby, herself and the community at large.

Maria is a happy, smiling young mom. She had already had a daughter and welcomed the thought of a new baby coming to the family. When Skyla was still in the womb, doctors diagnosed her with clubfoot, or congenital talipes equinovarus (CTEV).  This was hard to hear, but gave the family time to adjust before she was born.  At 4 days old, Skyla was put into casts on both legs, which had to be changed every week. The countless hospital visits; the surgery, and the leg braces were all a part of Maria’s life with her new baby.  She and the family were optimistic and reassured at every turn that they would be successful in straightening little Skyla’s feet. This is similar to what parents go through when their child is diagnosed with Hip dysplasia. Learning different ways to bathe, carry and entertain a baby in a cast or brace is something challenging to get used to. Over the next few years, getting used to it is what they did. In fact, not only does Skyla run around even with her casts, she can also be seen riding her bike like an expert at only four and a half years old.

When I asked Maria what were some of the difficulties she experienced with having a baby with medical issues, she was very honest and said, “It was a bit hard at first, as there is no real support group here for this. I found it helpful to go online and research and hear from other parents.” She also shared that, “Skyla is my hero. She never let this hold her back. She crawled, and ran and even though I was tired, frustrated and sometimes sad about it, I knew that this was fixable and we were on the road to recovery.”

Maria told me that bathing was especially difficult, as she couldn’t ever fully submerge Skyla. “But, the hardest thing might have been all of the strangers who asked about her,” she said. “People would often look at her with pity, and ask what happened?” Granted it did look a bit like she had two broken legs, but Maria, tired from lack of sleep, and feeling delicate, found it a bit overwhelming.  When I asked her if she had any advice, for curious, well-meaning people who approach others in search of information, she said, “Maybe just ask what her name is!”

Talking to Maria made me smile. It’s good though to be reminded, that all mother’s, of all babies, want to see their babies as normal, adorable little people. We might want to entertain this when reaching out to people we meet.  People are always more than what they appear, and even babies in braces, casts, and wheelchairs have names.

The International Hip Dysplasia Institute (IHDI) is a collaborative, international, not-for-profit effort to improve the health and quality of life of those affected by hip dysplasia.

References:
[1] The International Hip Dysplasia Institute (IHDI)
83 W. Columbia St. Orlando, Florida 32806
Fax: (321) 843-5298
http://www.hipdysplasia.org/default.aspx
[2]   Infant and Child Hip Dysplasia, “Causes.” http://www.hipdysplasia.org/Developmental-Dysplasia-Of-The-Hip/Causes/default.aspx

Links:

Another book by author Betsy Miller, The Parents’ Guide to Clubfoot
The Parents Guide to Clubfoot covers all aspects of clubfoot in babies and children from diagnosis through treatment, emphasizing the Ponseti method, which minimizes surgery. Written in everyday language, this book explains clubfoot, discusses treatment for mild to severe cases, and includes perspectives from Ponseti-trained clubfoot doctors and parents of children with clubfoot.

Tammy Jennings is a mother, writer/photographer and teacher. She has taught workshops and classes on women’s wellness, parenting and childbirth education for over 20 years. Presently she is a University lecturer, and has put her “doula cap” away, but she has had the great honor of attending many births. She lives on Oahu with her husband and the last of three children left in the nest! Tammy has a Masters degree in Interdisciplinary Arts and is a certified Childbirth Educator/Doula, Massage Therapist and Nutritional Advisor.

October 6, 2011

RELATED POSTS

css.php