Parenting Lesson #1: Following My Mom Gut

JackIncast
external tibial torsion

My older son Jack is now 15 and over six feet tall.  He has very light blue eyes, fine strawberry blonde hair and lots of freckles. He’s learning who he is, relates better to adults than peers, and has a cat who loves him. And he’s been through a lot in his short life. My wish for him is that the hardest parts are behind him.

Relatively, I think they are.

Jack was a very planned child. I had married his dad at 29 and didn’t think I wanted children. I was the youngest of four and my limited experience around babies and small kids had been four or five babysitting disasters. But, when I was 34, my mom (69) was diagnosed with a benign brain tumor and my thoughts about children shifted. Suddenly I HAD to do it. My mom needed to see my child. Despite having a partner who was not yet a grown up and despite living from paycheck to paycheck. I was nearly 35. It was now or forget it.

I peed on a stick in July of 1998 and remember feeling, for the first week, sore all over. Almost like I had the flu. That progressed into full- blown morning sickness for four months (I could not be in the same house with any type of cooking fish).  Every checkup told me I was progressing fine, with one exception: I consistently measured a month larger than I was supposed to. And I was quizzed on the conception date every single time. I was 100% sure of when it had happened. My mom had had a baby over 9 pounds. My doctor’s reply to this bit of information was, “Well, you can drive a Jeep through your pelvis,” Which apparently was a compliment: I could physically handle a 9 pound baby; I just would rather not.

We did not find out what sex the baby was at my 16 week amniocentesis. In February of 1999 I went into preterm labor and was put on bed rest for six weeks. I took long term disability from work. My due date: April 5, 1999. I had my in-laws and mother visit frequently (my mother’s tumor turned into a watch and wait affair and caused her hearing loss on that side).  On April 7, 1999 I felt really uncomfortable and started tracking contractions. By midnight my husband and I were at the hospital, but they sent me home as I was not far enough along. I bore two more hours of complete agony: “Why did I think I can do this? I can’t do this!” came out of my mouth more than once. When I returned to the hospital at 2 AM they put me in a whirlpool, sat me on a bouncy ball and had me walk the corridors. Finally, at 6 AM, they gave up and put me in a bed, hooked up to an IV and gave me a wonderful “who cares” drug. I called my parents who were an hour and half away and they were at the hospital by 9 AM.  The back labor was so painful I found myself moaning in distress.  The epidural supposedly took the edge off — I cannot imagine what it would have been like without it!

At 8:13 that evening, after 26 hours of labor, Jack was born. My mom said later, “He just kept coming out and I thought, ‘He’s so big!'” Indeed. The doctors guessed his weight at 9 lbs. on the way to the scale. “Oh my goodness! Oh my goodness!” they exclaimed when the scale settled at 10 lbs. 14 oz. (Now I round that number up. I earned those ounces. He was ELEVEN POUNDS)  Later I found out he was two feet long!  The doctor spent half an hour repairing me, while a wide-eyed baby Jack picked his head up off the examining table and looked around. “You know all those newborn clothes and diapers you have?” asked a pediatrician, “You can return them all. He’s four months old.”

For two months I felt like I had been hit by a truck. He ate a lot and I was nursing. I was exhausted and felt like my body was not mine. And his dad had a job that meant he was only home half the time. I wondered what I had gotten myself into.

Jack’s development was normal. He loved books. He’d climb into any adult’s lap with one, ready to be entertained. His vocabulary was big. He loved his doorway jumper and crawling up and down the stairs. He walked late, at fourteen months, as his growth stayed at the 99th percentile. People in stores asked me why he was not talking at seven months. He looked like he was a year old!

When he was eighteen months old, he sat next to a child at daycare eating a peanut butter cracker. The director called, very concerned: Jack’s face had swelled up on that side only. We rushed him to the ER: panicked new parents. He was given Benedryl and a referral to an allergist. When I took him there for the back prick allergy test, he was a good sport. The diagnosis was life changing: he had a deadly peanut allergy. EpiPens entered our lives. When he started at the Montessori at three, they had one in the office. When he went to kindergarten, they had one there. I had one in my purse. They were in my car and in my house. When he got older they were in his pocket, in his backpack and at school. We had to read labels carefully and sometimes they were vague or meaningless and he didn’t eat that item. There would be no rights of passage: no PB&Js or peanut butter cups. But we learned and so far we have never used a pen. He’s had three violent vomiting reactions to food and the allergist said this could be “his” reaction to peanuts (all occasions were due to food eaten at a restaurant or food manufactured on shared equipment).  I continue to hope we never have to use a pen.

Although they probably should have been, his feet weren’t on my radar until he reached the age of around four or five. I tried to remember when I really noticed. I brought him to a podiatrist about then because his feet had no arch. She told me he had flat feet and had me get special inserts. And that was that.

But it wasn’t.

As he got a bit older I could not help but notice him toeing out. His feet were big for an eight-year-old and his pediatrician in Florida insisted it was just large flat feet that made his walk resemble that of a duck or Charlie Chaplin. He would “grow into his feet” I was told. As a mom, my gut was poking me, telling me something more was going on. But, with the doctor’s advice, I waited. His dad and grandparents watched him at Little League, which he was desperate to join and found he was terrible at. “Turn your feet, Jack!” they shouted. “Run straight!” But he physically couldn’t. When he turned his feet straight, his hips didn’t line up. He couldn’t walk that way, let alone run. Was my poor son doomed to a life of oversized duck feet? What would PE be like when he had to run track?

His father and I were in the process of splitting up at this point. And Jack’s little brother (4) didn’t have any of the same issues.  As I navigated myself and my boys through the divorce, Jack’s gait issue was pushed aside.

Until I moved to another state.

It was now 2010, Jack was 11 and I had moved from Orlando to San Diego in June to marry my second husband. My kids joined me in August and allergy-prone Jack was immediately hit with hay fever in this new, drier environment. I looked up pediatricians and took him in for an allergy check. The doctor was younger and spent a decent amount of time with us. I was impressed. My gut pushed me hard and I asked, “While we’re here, can you take a look at his flat feet?  He has an awkward run, too.” The doc had Jack remove his socks and shoes and walk down the hallway and back. Then he did something the doc in Florida never did: He asked Jack to point his toes straight and walk. The result was a disaster: he could barely keep his balance and had to widen his stance to take any steps at all. The pediatrician had him put his socks and shoes back on and vanished for a moment. He came back and handed me a business card. On it was the name of the head of Orthopedic Surgery at Rady Children’s Hospital in San Diego. THE second ranked hospital for children in the country, which was 20 miles away. “Call him and set up a consult.” said the doc. “Something isn’t right here.”

I walked out of there feeling validated, yet stupid (that I had waited this long to really speak up) and terrified for my child that it was something major.

Our appointment at Rady two months later was an epiphany. The doctor was a cross between Dr. Zhivago and the Captain Kangaroo of my childhood. He loved helping children and was gentle with Jack. He took a bunch of x-rays right there, had him walk down the hall and back and then run the same path. Then he examined Jack’s feet and hips and had him sit up. He looked Jack directly in the eyes and said, “You know, we can fix this.”

“Really?” Jack whispered, his look disbelieving.”It’s not something I’m doing wrong?” The doctor shook his head, no. Tears filled my eyes and I felt like the worst mom ever. I had KNOWN in my gut that something was very wrong. But I’d listened to the doctor in Florida and not gotten another opinion.

The doctor looked at me. “He’s nearly eleven, so the age is perfect for this surgery. He hasn’t hit the growth spurt that will help him heal.”

I swallowed, my throat dry. “What is it?”

“Everyone knows about children’s feet toeing in.” I nodded. “This is the opposite – toeing out. The fancy name is external tibial torsion.” he said. “And your son’s is pretty severe. I would say 45 degrees on each side. The fix is to break the tibia and fibia on both legs and rotate the bones under the break and pin them. He’ll be in a wheel chair a month and in a walking cast and crutches for another month to six weeks after that. We will do one at a time.”

The ride home was filled with hope and trepidation. Surgery on my child. Jack was mostly ecstatic, but partially scared as his anxiety started to take over. I kept repeating to him that WE would take care of this.  And the moment I got home, I started Googling. The result: relief and another epiphany.

CAUSE:

  • Hereditary. (Well, my dad had flat feet, but did not toe out)
  • Not usually due to in-utero position as the fetus’ tibia usually rotate internal. (In Jack’s case it was due to this, as he was a VERY large first baby and the orthopedist said that he thinks the rotation described never happened due to lack of room)
  • Tight ligament and tendon structures (hamstrings, iliotibial band). (He complained of aches)
  • Can be caused by a true twist of the lower portion of the lower leg bone (tibia) relative to the upper portion of the lower leg bone (tibia).

SIGNS AND SYMPTOMS.

  • Commonly seen when children begin to walk.  Becomes more apparent between the ages of 4 and 7.
  • If the hip is normal the knee appears to be straight when watching the child walk yet the foot and lower leg turn to the outside.
  • Usually associated with a flat foot deformity.
  • Poor push off power during running.
  • Child may lack coordination during activity. (He was incredibly physically awkward.)
  • Premature fatigue with activity. (He always complained of this)
  • Runs poorly as the child runs through the midfoot and not over the ball of the foot as in a normal gait. (YES!)
  • Can be associated with knee pain (patellofemoral instability). (Jack complained of this often, especially after running.)

TREATMENT:

  • Full lower extremity examination to rule out other coexisting problems.
  • If the foot is flat, orthotics are necessary for the foot to prevent the creation of or worsening of a flat foot deformity. It will also help to bring the foot slightly up and in, lessening some of the appearance of the deformity. (I brought him to a podiatrist at four or five due to flat feet: the out-toeing was not yet visible)
  • If the condition causes problems with gait, pain in the knee, or is of significant cosmetic concern, surgery can be performed at the lower leg (above the ankle growth plate) to take some of the rotation out of the lower leg bone (tibia). Surgery should not be performed until the child is 10 or older.

I read the last sentence with relief: The timing of this discovery was stellar age-wise. Jack was eleven and in sixth grade. But it was also not so stellar as he was in a new school system and had no friends. He was also now a middle child and a middle son, instead of the oldest, and suddenly had to share a room with his seven-year-old brother. But my son wanted it. He simply wanted to be physically normal. He’d always felt like a freak, and now, to be able to fix it was monumental.

Valentines Day, 2011.  Two days after my husband and I got married on the beach, I took my son and his aunt (my ex-sister-in-law, who’d arrived in town for the wedding and stayed to help me through the surgery) to the hospital at 7:30 AM. His father met us there, having flown in from Florida to help. He and I took a nervous but committed Jack to pre-op and then waited with his Aunt. She was my rock and kept me distracted as I sent my new husband text updates  The funny thing was, I never saw it ending badly. The timing of this condition’s discovery could not have been more perfect.

The nurse came out after an hour and a half: Jack was in post-op but having trouble waking up  I went to the McDonald’s (in a children’s hospital?!) and got a bite to eat. After about an hour, the nurse came back: Jack was awake and asked for me, much to the chagrin of his dad. He was very awake and said he really didn’t hurt but his leg felt heavy. They moved him upstairs to a shared room with one couch to sleep on. The beeps and whistles and whirs of the equipment attached to my son, who was desperate for sleep, kept him awake most of the night. His blood pressure soared as his anxiety took hold and came rushing out of his mouth: This is a hospital and I am going to die. This is a hospital and I want to leave. This is hospital and and I can’t sleep. Am I okay?  I reassured him while his dad, quickly losing patience, left to find food. I had an “on my toes” sleepless night in a noisy room, feeling thankful that our visit there was finite and having new insight and empathy for the parents of children with heart defects, cancer, pneumonia; conditions far more serious than Jack’s.

The next morning the doctor came in to tell us the surgery had gone fine, what to do at home, and to remove the drain tube from the bottom of Jack’s cast. His leg had two pins in it, not visible over the cast, which would come out in a month when the cast was removed and replaced with a straighter walking cast. (Jack told me later that the tube removal hurt worse than the pin removal, which came much later.) Next was a visit from a physical therapist, as he had to learn to use crutches. Jack’s dad couldn’t understand that a sleep-deprived, morphine-filled kid could not immediately figure out how to use them. I asked him to go down to the in-hospital pharmacy to fill Jack’s take home prescriptions, leaving us alone to navigate the crutches. I explained to Jack that it was only for getting around our small house and that the wheelchair he would need at school for the next month was waiting at home. This made him relax. “There will be no crutch marathons,” I told him and he laughed for the first time in a day. By the time his dad returned, we were ready to go home: He’d been discharged. We maneuvered him into the back seat of my small SUV: his cast was up to the top of his thigh and wouldn’t allow him to ride in the front seat. Then his dad gave him a hug goodbye. He was headed for the airport and back to work.

Once home, his stepdad had made a wooden ramp up the front door step into the house and he and I helped Jack inside. His stepbrother let him play on his Xbox in his room, and his little brother stopped whining for a few hours. He alternated between the couch and his room, using his crutches handily. The first few times I helped him in the bathroom. After that he had it down. We stayed ahead of his pain as I religiously gave him pain meds every six hours (and he only needed this for the first three days home). The school calendar was such that he was on a break for a week, too. This allowed him to avoid missing classes and dealing with subsequent makeup work. On his first day back at school I took him into the health office, which had been notified of his issues, where he was told to come in and use their restroom as it was easier to navigate than the standard middle school facilities. Instead of PE he was allowed to go to the library, which for a book lover like him was a great thing. And I took him to school every day. I hefted the wheelchair out of the back of my car and wheeled him in. I remember it being hard: but again, knew that it was all temporary. And I remember knowing what the end result meant for my child: Near normalcy.

After four weeks in a wheelchair we returned to the hospital for the cast removal, pin removal and walking cast placement. I video’d the event as Jack, anxiety-ridden and wearing headphones, was certain the cast saw was going to cut into his leg or one of the pins. As the cast came off his leg looked scaly and withered. The metal pins sticking out of it looked painful, but were not. Jack did NOT want them removed. “It’s going to hurt, I know it’s going to hurt.”

I caught the eye of the tech, who nodded, and I took Jack’s face in my hands and said, “Look at me. It might, but not for long.” He looked away. One pin was gone!  He looked back at me and I smiled. “Look at me again.”  He did.  Second pin gone. Victory! He picked a cast color and they recast his leg, a bit straighter this time, and put a boot on that foot. I told him, “Wheelchair ’til we are home, then practice with crutches.”  No pressure. This child folded when chastised. The next weeks, like a champ, he figured out the walking cast and the crutches; finding it exhausting for the first few days and then easier.

At the end of six weeks, back to the doc. Cast removed! The first thing he wanted to do was take a shower without a cast cover and without his mom there. He learned to walk again – right leg straight and true; left one still toeing out 45 degrees. I could see how this was going to be when it was all over and there was no denying that despite all it entailed, the difficulties would be worth it.

Fast forward: Leg #2 done in September of 2011 after a month of 7th grade. This time school work to make up. But this time it was just Jack and me. He was more nervous because he knew what was going to happen. I had the pre-op nurse give him a lovely drug called Versid, that relieves anxiety and also affects short-term memory. (Later, Jack had no recollection of a conversation with his surgeon about why super heroes wear their underwear on the outside of their tights. LOL) And this time it was a private room, and me telling the night nurse to give him something to sleep that night.  We both did. It’s amazing what five hours can do!  His dad could not be there because of work, but texted me regularly to check in.

By Christmas of 2011 the cast was off his second leg and he was done. I watched him ride a bike that month, his feet straight and true on the pedals instead of pointing right and left. Then I watched him walk and run and found myself in tears. His feet will always be flat, but i was sure he’d grow into their size: I was tall and so was my brother.

And now?  It is nearly four years later. Jack is 15 and over six feet tall with a size 13 shoe. PE does not hurt and physical challenges do not make him doubt himself. He’s more confident overall and getting great grades in high school. I grin when I look at them. I am grateful for the pediatrician here who saw it, the orthopedist who “did three of these a month” and could fix it, and the nurses at the hospital who listened to a mom who had never had a child admitted to a hospital before. I am grateful for my husband and his support: he’s truly my partner and rejoices in Jack’s victories. And I am grateful for insurance, because even with it, I was still paying my out-of-pocket for the surgeries until last year.

Mostly I am grateful that I followed my gut. I knew something was not right with my son. As his mom, I had to be his assertive champion and I urge moms out there to do the same. The chances of having this condition are 1 in 5000. So I tease Jack and tell him “You’re one in 5000, kid!”

 

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