A diagnosis of hip dysplasia can be overwhelming. Kate’s good friend, Elizabeth, is graciously sharing her son’s diagnosis and her family’s experience with hip dysplasia.
Theodore’s Story
Our son, Theodore, was classified as frank breech throughout pregnancy. This meant his feet were up near his head and he had to be delivered through a cesarian section. When he was delivered, one of the first things the doctor said to us was “WOW! His hips are loose.” This, we later learned, meant that he had severe developmental hip dysplasia on both hips.
Developmental hip dysplasia is where the baby’s hip socket is too shallow for the thighbone to fit properly. We learned that this is most common with first born, breech babies. It’s more common in girls and typically there is a family history of developmental hip dysplasia.
Here is our journey:
When Theodore was at the hospital we were told to double diaper him in hopes that it would guide his thigh bones into the socket. At two weeks old, we went for our first hip ultrasound and saw that he needed further correction. We first were given the Pavlik harness. The goal of this harness was to gently lift the thigh bones into the correct position while still giving his legs some natural movement. He wore a Pavlik harness 24 hours a day and was put on a 12 week plan with ultrasounds every 2 weeks.
We were told that this treatment course has a high success rate but after the 4th week, we weren’t seeing results and were recommended an abduction brace – also referred to as a rhino brace. I would describe the brace as a helmet for your little one’s hips. It’s a stable brace so he couldn’t move his thighs while his calves were free. Again, this was a 12 week plan with check ins every two weeks. Again, this has a high success rate but Theodore’s hips were stubborn and we didn’t see the results our doctors were hoping for.
From there, we had two surgeries. Our doctor tried the least invasive path possible first. This was a closed reduction procedure at 3 months old. For this procedure, Theodore was put under anesthesia and the doctor “set” his hips in place. Once the hips were set, the doctor put a spica cast on which covered the entire lower half of his body. Theodore, was in this type of cast for 12 weeks with a cast change at the half way point.
While the closed reduction surgery secured one hip, the second was still not in place. So at 9 months we did the full open reduction procedure. For the open reduction surgery, the doctor makes an incision to open up the hip. He then can repair the root of the problem and reattach the hip in the correct position. We were in this second cast for 10 weeks. At the end of this term, we saw enough progress to pause treatment.
Moving forward, we go to an Orthopedic Doctor every six to twelve months for x-rays until Theodore is 18. It has been exciting seeing his x-rays progress and watching the hip socket form as it should be!
Tips for caring for an infant/toddler undergoing hip treatment
1. Swaddling
Swaddling can exacerbate the problem. We personally got the Ergobaby Swaddle Wrap for Theodore and were able to use it with all treatment forms. I would also consider the embé baby swaddle for 6-14 pounds (also comes in an option for 12-18 pounds), if we were going through the same journey today.
2. Carriers
Carrier with a “natural” hip position work best. So the Ergobaby Carrier was a great carrier, but I also love something as simple as a ring sling where their body can naturally rest against yours.
3. Diaper Changing
Diaper changing with the Spica cast can be a challenge. I found “Hip STIX” on Etsy that helped get the diaper nice and tight in the cast (picture above). For the cast – prepare yourself with small diapers (size 1 or 2) to push inside the cast and larger diapers to go over the cast. I purchased cute cloth diapers to go over the cast and that was helpful and fun.
4. Bathing
Bathing with the cast was easiest done alongside the sink. This link has an awesome tutorial. But we also got Mustela wipes and the Mustela no-rinse cleansing water to spruce him up in between baths.
5. Getting around
- Car seat — we were able to rent the Britax Hippo from the hospital. They helped us install it before we left. Britax doesn’t make these anymore. Check with your hospital to see if they have a rental program. Maxi-Cosi makes this option for the cast.
- I highly recommend getting a wagon vs. trying to fit in the stroller. We splurged on the Veer Cruiser with the toddler comfort seat and it has been amazing.
- A stroller fan is a must because the cast makes them pretty hot
6. Household
- We modified a Bumbo Floor Seat for Theodore’s second cast and this was the most comfortable way for him to sit and eat. also put the Bumbo Floor Seat on a lazy susan then put a play table around him for entertainment.
- A wedge for the crib to help prop up their head.
- The Boppy pillow for younger babies or a beanbag chair for older kids is the most comfortable way to sit.
7. Outfits
- Convertible gowns for younger babies
- Rompers in one size up are the best because they cover the cast! I got a bunch on sale from Tea Collection. It was nice to get these pretty inexpensively because the cast made holes in them here and there.
- Onesies in one size up. Onesie extenders were nice to have.
8. Nursing
The best position for nursing for us was having Theodore ‘straddle’ my leg, with one baby leg on each side of my leg, laying on my stomach.
Surgery Day Tips
1. Bring snacks
These are long days so bring drinks and snacks for mom and dad. If you’re nursing, the hospital may provide you with a meal but check before you go.
2. Bring entertainment for YOU
The open reduction surgery can take several hours, so bring something to keep your mind occupied.
3. Bring entertainment for your CHILD
For your little one, they cannot eat before surgery and it may take an hour or so after surgery to be cleared to eat. Bring items that will keep them entertained. We brought a few books, something to play with and chew on like a NogginStik. If you have a pacifier baby, bring a lot of extra pacifiers and a clip to keep it from falling!
4. Kimono
Kimono style shirts one size larger than your baby’s non-cast size. I liked these as the hospital because I could change him out of the gown ASAP and the staff could still access any monitors easily. Baby Gap has them in bigger sizes that work well!
5. Petaling the cast
Duct tape and Moleskin tape for petaling the cast. I got cute Packers and Minions duct tape to jazz up the cast
6. Plan out your time
We didn’t change our “every day” one bit .. I actually planned out the twelve weeks very detailed to keep activities on our calendar and make the time go faster. Theodore even learned to crawl and stand in his second cast!
Additional resources:
- Boston Children’s Hospital has a hip dysplasia institute so their information is really clear and thorough, click here.
- International Hip Dysplasia Institute’s Blog sheds a positive light!
Other helpful blog posts:
- 5 tips for preparing your child for the doctor by a child life specialist
- 10 common illnesses babies and kids get
- Medicine kit essentials
- 5 things most parents don’t know about car seat safety
Have more questions? Schedule a text or video chat consult with Kate, Lauren or Natalie (NICU RNs) and they can help answer any questions that you have!
**This post is educational and not meant to take the place of your provider. Bumblebaby makes a small commission on some of the items listed above
