Being Prepared
This is kind of a false title because I do not know if you can be fully prepared to hear the news that your child may never walk correctly or with out pain. That is one of the first things that I heard the doctor tell me about Natalie. That is until he said “with out surgery of course.”
The word surgery slapped me across the face that day in the doctor’s office. I was so stunned I know I did not hear all of the conversation going on around me. Here I was bringing my daughter to an appointment where I thought the doctor would say something like “She will grow out of this, we only worry when the bones are curved as well” or “I think that if she wore a brace for a little while it will help.” I thought well she is only slightly bow-legged surely it will correct itself with out much help.
I was completely unprepared for the rest of the appointment. He brought in the x-rays and you could see without assistance that her little leg was not in the proper place. Her left hip looked perfectly normal, in the right spot, growing normally. Her right leg was nowhere near where it should be. It was like an inch higher than the other side. I was shocked. All I could do was sit there. I could not even form a rational thought. I just sat holding her in my arms thinking this is not happening.
I wish that I had known what I was walking into that day. I had asked my dad to drive us to the city because I did not know where I was going. I was so glad because he asked several questions for me. He made sure that surgery was necessary. He asked things like how long till she would recover. How long would she be in the cast? You know important questions that I could not even begin to put together. I was so very thankful that he was there with me and that I did not go alone. My original thoughts were that I would be going alone, thank goodness I wasn’t. I do not think that I could have handled it.
Many of you already know before you see the surgeon what you are dealing with. I wish now I would have asked her regular doctor to check her more thoroughly on that particular visit. Maybe I would have been prepared with some really good questions to ask when I saw the surgeon. Things like will she ever be able to play sports, or even run normally? If she falls down hard, will it hurt her badly? Will she grow up without pain everyday? Will she have severe arthritis when she grows up?
I could go on and on about questions I still have. I always forget to ask when we go because I am so happy that she continues to make such great progress. The best advice I could give to some one who just found out is to be prepared for the worst. Most of the time with this condition surgery will be required. There are some that are lucky and it can be fixed with a harness or brace. Write out your questions so that you do not forget to ask them. Ask questions about the procedure that is necessary for the correction.
January 12th, 2009 at 5:42 am
i had almost the same reaction to yours,but i started crying because i couldn’t believe it. i would describe it as a slap in the face as well. then i had all this thoughts running through my head about many things. see i was born as well with hip dysplasia and went threw 7 operations from 4-9 yrs. old it was horrible i remember being in pain all the time i thank god i am better and healthy now so i can take care of my two little ones.
But when the doctor told me she needed the surgery i was thinking of me all the pain i went threw i didn’t want that for my child i had to go home right away to talk to my husband and family. i was alone at my appointment it was a horrible day the day i found out her hip was out of place, which explained all the crying and fevers.
My husband and i talked and prayed then made a decision and were glad we found out what it was that was hurting her and that it was something the Dr. could fix so here we are getting ready for a second surgery. all i can say is that this kind of situations is what makes us stronger… to keep moving forward and to keep enjoying every second of every minute of life.
thank you again for sharing you story.
January 14th, 2009 at 1:19 am
We found out at her 9 month check-up, I know what the \"slap in the face\" feels like. She was just going for her vaccines, but then from that day on we have a different out look on everyhing. The doctors tried the brace for a little over a month but now we have a surgery date. We have a month to try to prepare ourselves that is why I am looking on line. Do you have any advice on anything that may help us through this process? It looks to me that keeping the child dry in the diaper area is a BIG part, any hints? Thank you for your time.
January 14th, 2009 at 4:26 pm
The good thing about finding the problem now is that she is on the road to recovery. It will not be easy to go through this, but it helps if you keep in mind that you are doing this to benefit her health. This is what I told myself on the really hard days. This is just something you want to keep telling yourself. I still tell myself this when we go in for the follow up appointments and we have to get x-rays. This requires me to hold her down for a minute. Not very much fun.
I just thought I would share that little bit of information. It helped me a lot in the beginning to remember how the doctor showed me she would walk if we did not fix this problem now.
You are right when you say the most important is keeping the cast dry. This will not only help keep your daughter happy; it should help with the discomfort they can sometimes have. There is a cast care page on the site that gives instructions on how to keep the cast clean and dry. I am going to try to post some pictures that might help explain some of the diapering issues.
I would also go to the store in advance and buy extra diapers and supplies that you will need. You will need two sizes of diapers. One for the inside of the cast and one for the outside. On Natalie, I used one size smaller diaper than she wore going into the surgery for the inside. The outside I used two sizes larger. I hope that makes sense. I would also recommend buying butt paste. It is a diaper rash ointment that helps protect their little skin against moisture. I would just put some on Natalie’s back everyday so that she did not break out. I did this to prevent another break out of sores that she developed. Excessive sweating can cause your child’s cast to become wet; making the skin very irritated.
You will want to dress them lightly. Heavy clothing will make them uncomfortable. I used onesies a lot. Dresses work great for little girls too. If you do not have to use pants, I wouldn’t. It can be difficult to find any that will fit over the cast. Stretchy pants such as leggings work if you need to put pants on.
You will also want to keep in mind that she will not be able to fit in most of the baby stuff she fit in before. For example, the high chair, swing, bouncy seat, and walkers will most likely be too small now. Natalie still fit in her stroller so I used it a lot with rolled up blankets for support and some small pillows that I made. We also used a sturdy bean bag. It works great because you can move it around until if fits to their shape for great support.
I hope that this helps you some. I tried to touch on everything that you might encounter. If you go to the cast care page, I will try to have some pictures so that you can see how we diapered Natalie. It is kind of hard to explain, but this method is what saved us. It made a huge difference in how happy she was. There are specific things that I list on the cast care page about diapering. It will give you a little more information.
Thanks