Patient Stories
Riley’s Story
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” Romans 8:28 (NLT). I never heard my biological clock ticking away the years loudly in my ear. I had been married to a great man for 10 years, and we were having an awesome time together. I loved my career, and I was progressing nicely up the corporate ladder. I didn’t really have a strong desire to change things when they were going so great. But I also couldn’t imagine us growing old with no family. So my clock sounded more like “now is as good a time as any other, and you’re not getting any younger.” Then, I got pregnant, and everything changed.
I absolutely loved every part of having a baby. The pregnancy went smooth with no morning sickness, so I started packing on the pounds right away. The only snafu was when we found out the baby was a girl. (I just knew she was supposed to be a boy.) The C-section delivery went well, as far as C-sections go. And we had a beautiful baby girl. It was such a very exciting time!! The joy that filled my heart from holding that sweet little girl is truly indescribable.
The morning after baby Riley’s birth, her pediatrician came to the hospital for the customary initial check up. Riley was in the hospital nursery when she did the check up, so we weren’t actually present. The pediatrician came to my room to let me know she had seen Riley, and I will never forget it. In the haze of everything, it seemed so innocuous then. The first thing she asked me was if there was any history of hip problems or hip replacements in our family, because she had felt a slight “clicking” in Riley’s hips. My heart sank a little when she asked that, but she assured me it was not a big deal, and we would look into it further in the doctor’s office once we were released to go home.
At Riley’s first in office pediatrician visit, the doctor still felt the “clicking” in her hips, so she sent us directly to the Pediatric Orthopedic doctor. And that is where it all began. Over the next few weeks, Riley had several checkups with the orthopedic doctor, including X-rays and ultrasounds of her hips a couple of times. He kept waiting and checking in hopes that her hips would tighten up on their own. Since my husband and I had been married, we have been strong believers in the power of prayer. But let me tell you about praying over your child!! Talk about “praying without ceasing.”
The X-rays were showing no improvement, so the doctor finally decided we were going to have to put Riley in a Pavlik Harness. He said we would try the harness out for a couple of weeks, and if she made progress, then she would wear it for six weeks. If she did not show any progress, he said we would talk about that when the time comes because the harness has such a high success rate. I was extremely upset that she had to wear the harness, but I kept praying and believing with all my heart that it would heal her hips and she would be great!
After a couple of weeks in the harness, Riley was sent for another X-ray. The doctor reading the X-ray told me it did not look like the harness was working for Riley. He off-handily mentioned something about surgery and a body cast, which the Orthopedic doctor had not yet gone over with us. I broke down in the X-ray room for the first time through all of this. The thought of my sweet baby in a body cast was just too overwhelming.
Our Orthopedic doctor did confirm Riley would require surgery, which would mean a body cast for 12 weeks. The doctor indicated to us that he would wait until she was six months old to do the surgery. So in the meantime, we just had to wait it out. Riley was in no pain of course from this so it was not a problem. I am not usually an emotional person, but I can tell you that the weight of it all was very heavy. During those months of waiting, I have never prayed so often and with so much determination in all my life. I never blamed God for this. I may have asked “Why?” a couple of times, but either way, He used it to bring me closer to Him. I really got my strength for this from Him. I kept hope through my faith and prayers all the way up to the surgery day that He would miraculously heal her hips, and we wouldn’t have to go through with it.
The day of the surgery came, and the doctor confirmed it was still necessary. In fact, we would learn after the surgery that one of her hips was 100% out of socket and the other was 80% out of socket. At this point, what can I say; this will forever be one of the hardest days of my life. To send my sweet, precious, tiny six month old into surgery; it was difficult. Of course the whole family was there at the hospital for support, and for that I am so grateful. I am usually good at thinking through things in a straightforward way − In a something has to be done kind of way. And this day was no different. I told myself this would be tough, but it had to be done and we would get through it. The surgery took about four hours after they finally took her back, so it was a waiting game. The operating room nurse did call every hour with an update to let me know it was going as planned. Finally, after the surgery was complete the doctor came out to give us his version of how it went. He explained that the surgery involved making an incision in her upper, inner thigh to allow for more lengthening of the muscle, then another incision was made at the inner hip joint area to allow the doctor to go in and set the hip joint in the socket. Then she was placed in a full spica (body) cast. He said everything went as planned and we would be called back to recovery as soon as they had her setup there.
No amount of mental preparation can prepare a parent to see their infant like that in a hospital recovery room. The recovery room nurse was not quite ready for us when they brought us back to recovery to see Riley. She still had all the surgery tubes and equipment lying on her bed. But worse still, they had not yet administered her pain medication and she was awake screaming. Her little face was puffy from the anesthesia and fluids and crying, and she just looked so pitiful. It was so hard for us to see her like that; I just can’t tell you the emotions that were running wild. The nurse was able to help me get positioned to hold her, then she gave her some pain medication. And finally, Riley calmed down. Holding her there like that in that big cast, there was no one else in the world at that moment. I love her so deeply and couldn’t stand to see her go through it all. After she was cleared from recovery, they moved us to a room where we stayed the night.
This is when our smooth surgery ended and the drama of having a child in a spica cast began. The nurse came in to Riley’s room and gave us some bottles and extra diapers and told us whatever we do, do not let the cast get soiled!! Then, she left, leaving us on our own.
The spica cast was open between the legs to allow room for diapering, but certainly not in a traditional manner. Almost immediately, her cast became soiled and no one was able to suggest any diapering method that prevented it from happening. After the first week, her cast was so soiled in the back that her back looked like it was covered in large water blisters, which was essentially a bad diaper rash. This is when I finally had a breakdown. The pain of surgery wasn’t enough, now Riley had a horrible rash from the cast. By the way, did I mention it was June in Memphis when we were going through this, so it was already blazing hot weather? I was worried that the mildew from the soiling would be so bad that the doctor would say the cast would have to be changed, which would require her to be sedated again. We became desperate and determined at this point to get her cast dry and to figure out how to keep it that way.
My husband found this thing on the internet called a “cast cooler”. You wrap it around the cast and attach a vacuum cleaner to it, and it is supposed to pull cool air through the cast. I thought to myself, what a gimmick! So we bought it. Remember. . . we were desperate. Well, what do you know?! The thing actually worked! In fact, Riley loved it so much that we used it on her throughout her entire time in the cast. She would sit for close to an hour with the vacuum cleaner running, pulling cool air through the cast and onto her back and legs. Because of the cast cooler, we were able to get the cast dry. We then used a strong diaper cream on her rash, and with her cast now dry, it healed very quickly.
Perhaps most importantly, we discovered the best way to diaper a child in a spica cast to avoid any additional issues. The secret? Incontinence pads. In fact, after everything was said and done, our doctor said he had never seen a cast stay so clean. However ingenious it was, you haven’t lived until you’ve gone to your local store dragging an infant in a full body cast around in a red flyer wagon, which you’ve stuffed full with boxes of incontinence pads to buy. You can imagine the looks. I think I even laughed at myself the first time. So I did what all enterprising women would do in such situations . . . I sent my husband for the pads. That too got its share of looks — turns out it’s apparently just as rare to see a 33 year old man buying the economy-size package of incontinence pads. Who knew? (I give full detail instructions on how to diaper an infant in a spica cast at the end of this story for anyone who needs to know. The diapering issue was only one of our hurdles we encountered through all of this.)
Before leaving the hospital after the surgery, we were provided a car seat that fits children with spica casts. Frankly, I am glad the hospital did this, because it is not something that even crossed my mind that we would need. In Tennessee, there is apparently a grant program that provides the car seats free of charge. So a state worker brought a car seat to our hospital room and left it with us. It wasn’t anything special, to be sure. It was just a normal car seat with really low sides to allow room for the widespread legs. Everyone assured us this was the standard car seat they give to spica cast patients so I never questioned it.
When it came time to checkout, my husband took the car seat to the car and installed it, and then he brought the car around to the front lobby door of the hospital to pick Riley and me up. One of the nurses rolled us out in a wheelchair and dropped us off at the door. We went to put Riley in the car seat, and immediately we knew she did not fit at all. It was terrible! Riley was in pain from surgery and each attempt we made to fit her in the seat was hurting her even more, causing more screams — all of which added to the anxiety. But it just wasn’t working.
We had no idea what to do. We had already been discharged from the hospital, so we didn’t feel like there was anyone really responsible for us anymore — and apparently they felt the same way because everyone disappeared. The nurse that originally dropped Riley and me off came back with another patient, saw we were having trouble . . . and quickly scurried off before we could ask for help. Meanwhile, a security guard was hovering and harassing us, riding our case because we were blocking the front drive to the hospital. Not to mention that my sweet girl had doubled in weight (15lbs. to 30 lbs.) over night because of the cast. Luckily, God was watching out for us in that moment, as He always is.
About that time, a nondescript man in scrubs walked by and asked if we needed help. We explained our situation, and he immediately went to work helping us resolve the issue. Turned out that the man was some high level administrator at the hospital. The whole thing turned into (what I can now say was) a comical situation. I mean, here we were, discharged from the hospital and technically no longer a patient, but with no way to get home because the car seat is incompatible with Riley’s spica cast. Thankfully, the gentleman ended up bringing in reinforcements — another state worker and two other hospital employees — and, truthfully, not a one of them knew what to do with us.
I mean, it is the law for infants to be in car seats. But no other car seat options would fit Riley. Turned out that the problem was it wasn’t common to have a child that small in a spica cast, and that’s why the standard-issue seat from the hospital didn’t work. The seat depth was simply too long for her. But when they called their legal department to ask if the hospital could risk sending us home with Riley riding in my lap, the answer was a resounding “No!”.
That moment was so surreal. I felt like Tom Hanks in that movie “The Terminal”, where the US wouldn’t let him enter, but his home country wouldn’t let him return. Riley — and my husband and I — was stuck in limbo in this hospital lobby, already discharged, but not allowed to leave. After three hours waiting in the lobby, someone came up with the brilliant solution of getting us an ambulance transfer home. But nothing’s really that simple when dealing with hospitals, who have been sued by attorneys, and who have now paid the hospital’s attorneys big money to write these ridiculous regulations making sure that no one could ever again sue them for that reason — or any other among a carefully enumerated list detailing a parade of horribles that will occur if one dares violate the regulations. The regulation in question apparently makes it abundantly clear that an ambulance cannot pick up someone for transport from the hospital lobby or any other common area (like the front door): they must pick up patients only from a specific, numbered hospital room. Okay, so we’ll just sit in this room over here. Um, no, you must actually be readmitted to the hospital to get one of these specific, numbered rooms, just long enough to notify the ambulance company of the specific, numbered room to pick us up from. And, like getting admitted to the hospital the first time around, that’s not the fastest process in the world. But, we finally made it to a room, and shortly thereafter the EMTs came in and were quite baffled at their atypical assignment for the day. But we finally made it home.
Thanks to the internet, we found the Britax Hippo (Spica Cast) Car Seat, quickly ordered it, and it solved the transportation problem quite nicely. After all of that, which was just the first week, we were able to focus on getting through the summer in the spica cast.
Over the summer, God would begin to reveal Himself to me through this process. My opening verse here says that God uses everything for good, and now I can say I truly, deeply believe that. I know God would never wish this on Riley, but His word promised that if she had to go through it, at least some good would come of it. Through the pregnancy and Riley’s short life so far, I had really prayed so hard that God would make a way for me to be able to stop working and stay at home to raise Riley. I longed for it so badly, and I let it affect my mood and outlook about going to work every day. Because of this situation, I was able to make arrangements with my work to be able to work from home while Riley was in the cast. That alone was such a blessing because the other option was unpaid medical leave. Instead, for ten weeks I worked from home with my mother’s assistance to help care for Riley. During this time, I began to understand why my prayers of being a stay-at-home mom had been answered with a “no”. God really opened my eyes during this time and showed me how much I enjoy my job and working, and that I am blessed with such a great job that is flexible with me being a working mom. This was so refreshing for me. We got through the remainder of Riley’s casts days with no issues. We even had fun with it. An infant in a spica cast is stationary enough to be able to polish her toes — so i did, and let me tell you, that got such a reaction from everyone, even strangers in public. Daddy also loved to raise her up high by the legs, which were rigid because of the cast, and it made it seem to Riley like she was flying, and she loved it. We also joked about the things we were going to say to people because, let me tell you, we were stopped every single time we went into public. At times it seemed to be for sympathy. Others though seemed to gawk. So my husband and I used to joke about telling people that it happened in a bungy-jumping accident. Anyway, we had some fun with it.
But there are so many things that are difficult about this whole process for a parent, and I can’t stress enough: You will get through it! Trust in God, and He will give you the strength for it. There are so many other things I could tell about our experience, but these are the highlights. There are also so many other little blessings God provided, like my health insurance paying for the spica cast car seat we had to buy, friends and family that sent food to us that first week, friends and family that watched Riley some so Tim and I could get out of the house, and the fact that she ended up only having to wear the cast 10 weeks instead of the expected 12 weeks. So look for the good in the situation and you will find it.
Diapering a Child in a Spica Cast:
As I mentioned in the story above, you will need incontinence pads like Poise pads, not the Depends undergarments. Get the long version. Also, you will need two sets of diapers: one set that are about the same size your child was wearing at the time of surgery, and the second set that are the largest size.
First step is to insert the incontinence pad under the cast. Make sure it is centered and you might want to place it so there is a little more length in the back instead of the front. If it’s too long, you may tuck it in the back some up under the cast — but this is not meant to fill the gap entirely, that’s what happens in the next step.
The second step is to take the smaller diaper and position it where you tuck it up under the cast but over the incontinence pad. Be sure to smooth the diaper out as much as possible to cover a maximum amount of area. This diaper should be big enough to stay in place once you tuck it in all around. If the incontinence pad is positioned well and changed frequently, then this diaper should not need to be changed every time since the moisture is almost all caught by the incontinence pad, which fills up the space quite well.
The third step is to place the large diaper around the outside of the cast as you would normally diaper. This diaper is really just to help keep the incontinence pad and small diaper in place. You should rarely need to change this diaper.
Some other useful items in general is a kid’s size bean bag, the cast cooler mentioned above, a red wagon in place of a stroller, and a sling carrier.
