Preparing for your Baby’s Hip Surgery – Top 10 List

In honor of Baby Hip Health Awareness Week, here is a  Top 10 List of things I recommend you do before your baby has a surgical intervention for DDH:

  1. Learn all you can about DDH ~  Read through the International Hip Dysplasia Institute’s great website. Get Betsy Miller’s book, The Parents’ Guide to Hip Dysplasia, and read it, too. Scour for all kinds of information about treatment options available and what DDH means for your child. The better informed you are, the better advocate you will be for your child’s health. When I found out about Sara, I talked to anyone and everyone I could think of – anyone with any kind of medical background. I talked to my PT, Chiro, friends, family of friends, doctors, pharmacists – I cast a wide web for information and it helped me more than you can image. Start talking to everyone you can think of to learn as much as you possibly can. I can’t recommend that enough.

2. Research surgeons ~Unfortunately, not all surgeons are created equal. I highly recommend you ask for referrals and get a second opinion. Don’t be afraid to ask your  potential surgeon a bunch of questions. If you aren’t sure what to ask, check out the very extensive list here. Sara’s surgeon said I was welcome to email him questions (because at the time of diagnosis I went brain dead and couldn’t think of a single thing to ask) but I did – I emailed him a very extensive list with close to 30 questions. His response: “Mrs. Marine, I can’t type. Can I call you?” And he did. Three times. Despite his helpful demeanor, we got a second opinion. In fact, we asked him who he would recommend if someone in his family had to go through this. And we went to see that doctor. We drove 6 hours for our second opinion and it was so worth it. In the end we ended up right where we started, but I was only able to feel confident in our decision because I asked question after question, met with another highly recommended surgeon, and asked more questions. In fact, I didn’t just ask the surgeon questions. I asked his nurses. I talked to the anesthesiologists, and the after surgery care crew. It wasn’t until I asked all of those people all of my questions that I felt able to make an informed decision. It took a lot of time and effort, but I don’t regret one second.

3. Network with DDH survivors ~ Join the hip-baby yahoo group. Connect with a group on facebook, find other people who have been through this to help you out. You’ll make some great friends on these groups and you’ll be glad you have them for support. I have a lot of links for support groups here. Connect with a few people and get their email addresses, cell phone numbers, friend them on facebook, get their twitters (can I say that?). You are going to be glad you did! As much as other people will want to help you out, most people just don’t have a clue unless they’ve been through this themselves. One of the things that helped me most was texting a survivor mom while my baby was in surgery. And I’ve been there for other moms. It still hurts to talk about this some times but it’s so helpful to have people there for me and to be there for other people. Connect!

4. Donate blood ~ Find out if you (or someone in your family) can donate blood for your child. DDH surgeries are sometimes so long and so complicated that blood transfusions are necessary. But you’ll only know if you ask, so add this to your list of questions to ask the hospital.

5. Enlist help ~ You’re going to need help. Especially if you have other children at home. My mother drove up from Missouri, my sister flew in from Seattle, and my mother-in-law and sister-in-law all helped, too. With three additional children at home, we needed every ounce of help. My MIL went with us to the hospital. My mom kept the other kids until it was time to pick up my sister from the airport. At that point, my sister-in-law took over with our kids, and my sister (a family doctor) met us at the hospital with my mother just as Sara was headed to recovery. We were incredibly lucky and able to go home the day of her surgery. At home, I really needed all the help I could get. My mom and sister cooked, cleaned, entertained my kids while I devoted all of my time and energy to Sara. She needed all the help she could get for a few days. You’ll be very glad you found extra help – even if you only have one baby.

6. Gather supplies and prep meals ~ Some things you just won’t be sure about – how your baby is casted and what that means for diapering for instance. But it does help to be prepared. Here is a list of supplies that helped us. Karen talks about how she prepared here for her daughter’s second operation after she found out 2 weeks post surgery that her poor baby’s hip had slipped back out while her daughter was casted. Having meals prepared ahead of time saved me more than once. I do a lot of cooking for the freezer and was very glad to have lots of bread and meal components ready to go once all of my help left. I tried really hard to keep up good nutrition throughout this ordeal – but it was only possible because of good preparation.

7. Prepare your child for surgery by boosting immunity and visiting a chiropractor. I am not normally a germaphobe, but the few weeks prior to Sara’s surgery, I stayed clear of germ infested areas and took extra precautions to boost her (and my) immunity. After working through a scheduling nightmare with our massively overbooked surgeon, the last thing I wanted was for Sara to be sick on surgery day and have her surgery postponed.  I’m also a huge advocate of chiropractic care. We made sure to take Sara to see our chiro to help her body stay aligned – I’m not sure if this had any impact on her easier surgery, but it could have.

8. Do something special with your other children, if you have any. ~ Not only is the mess hard on you, it’s also hard on any other kids you may have. I spent so much time researching and crying and hiding, that my other kids were {slightly} neglected. We tried to do something special with them before Sara’s surgery and I made sure to buy them gifts that I gave them the night before we took Sara to the hospital. They got nice artist supplies and created a lot of really nice artwork while we were gone. I felt good about that and they’re always glad to get new things.

9. Enjoy your child ~ Allow your baby to do something fun. The weather wasn’t that great leading up to Sara’s surgery and I was avoiding germ infested areas, but I made sure we went outside to play. We went to the park and I let her climb all over everything. The night before Sara had her surgery she spent 2 hours going back and forth from bath to shower and back to bath. That’s not something she would normally have been allowed to do, but I knew she would not have another bath for 12 weeks. And my girl loves baths. Truth be told, I was very worried about how she would cope without baths. And rightly so. After she became mobile in her spica cast, I had to make sure the bathroom door was tightly shut when her siblings were bathing – more than once she tried to climb in the tub, cast and all!

10. Take pictures ~ Before my baby went in for hip surgery I wanted to make sure we had up to date family pictures. I also wanted pictures of just her. I wish I would have taken pictures of her legs – I’d love to compare the unequal thigh folds before and after. I wish I would have gotten a picture of how uneven her legs were when she was on her diaper changing mat. I’m very glad I got a video of her walking prior to surgery, but in hindsight, there are a few photo shots I didn’t get that it’s just too late to do now. Think about what you might like to see befores and afters of and make sure you get plenty of pictures and videos!

Again, please share if you’ve been through this. What things did you do prior to your baby’s surgery?

Hip Dysplasia – Surgery Day

Sara’s surgery was set for 10 am on November 1. We were supposed to arrive at the hospital at 8:15 which meant we would have to leave our house around 7:30 am.

The night before, Sara took one really long bath, a shower, and then decided to get back in the bath with one of her siblings. 🙂 Since she really loves the water and won’t be able to bathe while she’s casted, we humored her, and it was quite funny to see her go back and forth between bath and shower. We had to wipe her down with special anti-microbial wipes the hospital gave us and then were not allowed to put any lotion or cream on her skin. I told her she needed to nurse a lot that night because she would be cut off at 5:30 in preparation for the surgery.

The lack of nursing had really worried me and I’d prepared for a fight. I had been incorrectly told that she wouldn’t be allowed ANYTHING after midnight, including breastmilk. After researching and having a few friends research as well, I had found enough sources to convince me that cutting off nursing 4 hours prior to surgery would be completely safe. I had printed numerous sources stating that fact and took them all with me to her pre-op appointments because I was bound and determined to convince her surgeon that she should be allowed to nurse most of the night. I was glad to find out that the person who told me midnight just didn’t know. The cut-off had been 4 hours prior all along and I researched for nothing. It kept my mind off the bigger surgery, so I guess I’m glad I had breastmilk to think about instead of the surgery! 😉

Anyhow, we arrived at the hospital late the morning of her surgery and it didn’t really matter because her surgeon was running behind too. We had to occupy her for quite some time. The staging area had a little wagon we were able to put her in and we wandered the halls for a good hour and a half. I was determined not to let her see me upset as I didn’t want her to catch on to my somber mood. It was one of the hardest things I’ve done and I am so thankful my dear husband was there to keep her. She doesn’t get mad at him for not nursing her! 🙂 And he’s much more stoic than I am.

We played peek-a-boo in the halls. She watched all sorts of medical professionals in different stages of surgical dress (hats, masks, gowns) and saw all kinds of medical instruments moving from place to place. She also spent quite a lot of time learning how to use Daddy’s iPhone to look at pictures of Kee’s (kitties). Occasionally I had to disappear because I did not want her seeing me cry. I was mostly an emotional wreck. But not once did she see tears in my eyes and I think having us act jovial helped her overall demeanor as well.

And then finally, they came for her at 10:45. Daddy was dressed to accompany her to the OR and off they went. I could not take her to the OR but it was important to me that one of us do it. I’m glad Dan was able to take her.

The anesthesiologist told us to expect her to struggle. They were putting her to sleep with a mask before inserting her with needles of any kind, and he said normally kids don’t like the mask as it starts to stink. When they got to the OR, the anesthesiologist asked which finger he should put the pulse ox on and she held up a finger for him which made the staff laugh. Then they put the mask on her and according to Dan, she just closed her eyes and went to sleep without a struggle.

And then the waiting began. Dr. Weinstein said the surgery could take up to 4 hours depending on what all they would have to do. They had to type her blood and have blood available for a possible transfusion. They inserted a catheter and she was given a caudal block so her bottom half would be numb.

We got a bite to eat and some coffee. I had been avoiding sugar for several weeks to try to boost her immune system. But that morning, I drank coffee with lots of sugar! 🙂 We received several cryptic messages about her progress but it was hard to figure out exactly what was going on. Around 1:30, Dr. Weinstein appeared in the waiting area.

He told us that he was able to get her hip back in place with minimal effort. She was so loose that he basically manipulated it to the socket without even cutting her. However, he needed to release the tendons to keep the hip in place so he performed an adductor tenotomy. While he had her cut open, he also cleaned out her hip socket. He told us her socket is big and deep which was good to hear. Often children with hip dysplasia have shallow sockets that prevent the femoral head from staying put. I was relieved to hear that that’s not the case with Sara. And then he told us the best news of all! We could go home that very night if we wanted. We had prepared for a 3-5 day stay so we were thrilled to leave that night.

And then we went to find our groggy, unhappy baby.

The one condition for leaving was that she had to pee first. She was casted in a very wide position which makes diapering quite difficult. The one downside to the easier surgery is that instead of being casted for only 6 weeks, she’ll most likely be casted for 12! It’s not even been quite one week yet, and that thing is already starting to smell. It’s going to quite ripe after 12 weeks!

And now we’re figuring out life with a spica cast. 🙂 It’s a challenge.

Hip-Healthy Swaddling

You may or may not know, but my 17 month old daughter was recently diagnosed with a dislocated left hip. We didn’t know anything was wrong with her until she started walking with an obvious limp, and pressed hard for answers after her pediatrician was not very concerned.

Her hip dysplasia diagnosis has been a huge blow to me. I, like so many people, have an expectation of 100% healthy babies. Of course, there are no guarantees in life…and we love her just the same!!! 🙂 It’s just beyond sad to me that she will be fighting hip problems her entire life and that I have to put her through a horrible surgery in a couple of weeks and then deal with her in a spica cast for 6 weeks to 5 months.

About 1 in 1000 babies is diagnosed with hip dysplasia. HD can range from a looseness of the ball in the socket (meaning the hip is not stable), to an all out dislocated hip (my daughter’s problem). Some babies are born with an immediate problem, and in some, it just happens because of a predisposition sometime during the first year of life. Most newborn doctors and pediatricians screen for HD at well baby checks, but it’s still not found all the time.

Here are some things to watch out for:

  1. Uneven thigh folds – they should match up on both legs
  2. Less flexible hip on one side
  3. Strange gait when walking (limping or waddling)

Some things you can do:

  1. Have your baby evaluated by a pediatric chiropractor
  2. Discuss any risk factors with your doctor. Risk factors include family history, breech baby, c-section delivery, girl, and first born. Best I can tell, 75% of babies with HD are girls! And the leg most often impacted is the left.
  3. Practice hip healthy swaddling if you swaddle. The hip socket is still developing during the first year of life and pulling legs down tightly and not allowing them to be in their natural state can encourage more hip problems.
  4. Carry your baby on your hip and cloth diaper. These things help keep the hips properly aligned so they can develop as needed.

Since my baby was diagnosed, I have been researching almost non-stop. I’m compiling a list of resources and blogs that have been helping me and will post it soon, but if you’re facing this problem, The International Hip Dysplasia Institute is a good place to start.

day2day joys

Walking with Hip Dysplasia

Warning…this is my first attempt at videos. Don’t make yourself sick by watching it… 😉

It’s a little hard to tell, but this is our 16 1/2 month old daughter walking with a dislocated left hip. If you look carefully, you’ll see that instead of her left leg rolling like it’s supposed to, she hikes it up and over.

When she first starting walking, I had a nagging feeling in my head about it being bad, but I dismissed that thought because she was such a new walker. After she didn’t get any better, and more people started commenting, I pulled out my handy dandy Dr. Sears’ The Baby Book: Everything You Need to Know About Your Baby from Birth to Age Two (Revised and Updated Edition) and started reading about limping. Frankly, it scared me.

I honestly avoid doctors. We only go unless absolutely necessary which isn’t very often. One of my favorite medical books is How to Raise a Healthy Child in Spite of Your Doctor. But I also trust and rely on my Dr. Sears’ books. When I read that we needed to have her seen right away, we did. And even when the doctor said she wasn’t concerned, we pushed until we were seen by a pediatric orthopedist. I trusted my mom sense and my mom sense said something was wrong.

I have been on pins and needles since her hip dysplasia diagnosis. I’m in and out of tears. I’m sad, mad, terrified of what’s to come. But I have finally come to peace. We’re headed to St. Louis next week for a second opinion appointment, more so to check out one more surgeon before we make our decision than to try to second guess the diagnosis. It is what it is unfortunately, and it’s totally obvious on her xray that her left hip is not in the socket.

I’ll let you know more soon.