Special Needs Spotlight || Lisa and Liam

G’day from Down Under! My name is Lisa; I’m a 35 year old American living in Perth, Western Australia with my husband Paul and our two children. Liam is 3.5 years old and was born with congenital talipes equinovarus, more commonly known as club foot. Our daughter, Cora, is 5 months old. Club foot, where the foot or feet are turned inwards and upwards from the ankle, is a relatively common congenital deformity, occurring in roughly 1/1000 live births. My husband Paul was born with club foot 40 years ago. Having, or being a parent with club foot is only a ‘risk factor’ for going on to have a child with club foot- there isn’t a clear genetic link/heredity… so we really didn’t know if our children would be effected. Unfortunately, I have a genetic disease, and both our children had a 50% chance of inheriting the faulty gene: Autosomal Dominant Polycystic Kidney Disease. We don’t know if either of our kids have it, and for various reasons, we don’t plan to find out. ADPKD is characterized by fluid-filled cysts growing in the kidneys. A normal kidney is the size of a closed fist- my polycystic kidneys are each the size of a football. A person with ADPKD also has a higher prevalence of various heart, liver, and brain conditions as well.

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Miggy:  Lisa thank you so much for being here today and sharing your story with us. Not only was your son born with club feet but you also have a kidney disease as well.  So lets start with you, can you tell us a little about your condition–when were your first diagnosed?  Did it affect you as a child?  And how does it affect you in your day-to-day life now?

Lisa:  My diagnosis was a complete shock. I was 20 years old, living away from home at an out-of-state college, running track and leading a very active life. I had an ultrasound for re-occurring bladder infections- that’s when they noticed my very large polycystic kidneys. There is no treatment or cure, you simply manage the symptoms. In my case that means high blood pressure, the occasional painful infected cyst, a permanently round belly, no ‘vigorous’ exercise anymore, and more recently- nausea. My pregnancies were classified as high risk, and generally I was worried there wouldn’t be enough room in my abdomen for a baby– but the body is an amazing machine, isn’t it?! My body adjusted and the babies fit fine!

My first pregnancy was fairly uneventful and my kidney function didn’t change. However, in the last 18 months, which included my second pregnancy, my kidney function dropped from 90% to around 40%. That is an extreme drop in function, and I really worry it is all happening for me– end stage renal failure. Not knowing what will happen is one of the hardest things to live with. It effects our job choices, where we could live in the future, when we could travel, and when we can retire. The worst is imagining my children growing up without me. The good thing is that it really forced me to have a good, hard look at what I wanted in life…. what was left on my bucket list, and at the life paths I had been debating. I realized I didn’t want to go back to school, I didn’t want to work part-time– all that was important to me was being present to mother my children.

Miggy:  Now, already having one condition to worry about, you’re pregnant with your first child and you find out that he has club feet.  Can you tell us when you first found out about his condition?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Lisa:  We found out Liam had bilateral club foot at the 19 week scan. Even though we knew there was a chance our baby could have club foot, it was gut wrenching to find out. Surprisingly, knowing there was a possibility he could have club foot didn’t soften the blow. My husband felt particularly guilty, and I can understand how he felt, because if either of our kids inherited my kidney disease, it’s hard not to hate yourself in a small, irrational way. When Liam was diagnosed, Paul’s mother told me everything would be just fine. She had lived through it herself, after all. My own mother responded the opposite way- full of anxiety and worry. Both of their responses upset me; there was no correct thing to say to me during that time!! Looking back, no one could say the right thing because I had just felt, for the very first time, the big crushing wave of protectiveness for my child.

Miggy:  Explain how your son’s needs affected his and your day-to-day life when he was first born?  How has his needs changed and what is his day-to-day life like now?

Lisa:  Liam’s treatment began when he was 13 days old. It’s all very routine and honestly hasn’t changed much since Paul went through it 40 years ago. But to me, a first time mom, it was unquestionably a living nightmare. Over the course of 8 weeks they slowly bent his feet outwards, little increments at a time, holding them in place with leg casts. I took Liam into the hospital weekly, often on my own as Paul was away for long periods with work, and physically restrained my newborn baby while they twisted his feet/muscles/ligaments outwards. He screamed. I cried and sobbed. His skin under the casts became broken and blistered. When his little feet couldn’t be twisted out any further, he had an outpatient procedure to completely sever both his Achilles tendons. They severed both his Achilles tendons with zero anesthetic, which was a decision the doctor made spur of the moment, and without my consent. For me, that was the darkest day of my life. I was already feeling traumatized from a difficult birth and from seeing and causing my baby pain, and then that happened.

After the tendon operation, he had 3 more weeks of casts. During that 3 month long casting phase, we couldn’t bathe him. After the casting ended, we entered the “boots and bar” phase. Initially he had to wear the boots and bar 23 hours/day for 3 months. His blistered, raw feet had to be literally crammed into the boots, until his chubby legs formed around them. I would remove the boots and his legs were much skinnier where they had been. Each day ticked by so slowly. Through some of it I was speaking to a psychologist, but in hindsight, I wish I would’ve gone further and taken some medication, as I was in a very dark place. Since then he’s required to wear the boots and bar ~12hrs/day- so he wears them at night to sleep in. When he was younger, this was fairly easy feat because he didn’t know any different. He’s 3.5 years old now, and naps without the boots and bar during the day. He knows other kids (and his parents/sibling) don’t sleep in them, so he doesn’t want to either (because they are hot and uncomfortable). He often begs us to let him sleep without them. But, we are nearly finished with the boots and bar phase. By age 4, if everything goes to plan, his treatment should be finished and his feet will be as corrected as they ever will be.

Miggy:  What are the biggest worries you face for Liam?

Lisa:  Although I’ve been reading This Little Miggy for a long time, I never offered to do a spotlight because I wasn’t sure I qualified as a special needs Mom, since my son’s condition is largely correctable.  But, as I read everyones spotlights, they echoed my experiences and feelings, so I decided I was in fact a Special Needs Mom. I guess for anyone with a club foot baby, the hardest part are the years of treatment, after that, hopefully Liam will lead a very normal, active life. I do worry that despite all we’ve done, his feet will relapse, and turn inwards. It happens. I worry he will be made fun of for his skinny legs (a characteristic of club foot kids). I know Paul was called “chook” (and still is, albeit jokingly) because of his skinny calves.

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Lisa:  Liam had thigh-to-toe leg casts for the first three months of his life….when we were still learning how to put diapers on, and when babies poop multiple times a day. We had to find a way to keep the poop off his casts, since they were only changed weekly. We had several funny inventions until we settled on handmade “poo guards” which my mom created. I thought about selling them on etsy: “POO GUARDS, 2 for $10!.”  Once we entered the boots and bar stage, we had to be careful our infant son couldn’t hurt us 🙂 Getting knocked with that bar is dangerous! Our poor black lab copped it several times! Now that Liam is older he often pretends his boots are “rocket boots” and nightly he pretends the bar is a big key, and he uses it to lock his closet door. It’s pretty cute.

Miggy:  How can people best approach or respond to your son and you when they find out about your condition? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Lisa:  For me personally, the club foot treatment has been a very traumatic experience. If I had to go through it again with our daughter, I think I would handle it much better. So when people asked me what was ‘wrong’ with Liam’s legs, it upset me. Their stares upset me too. Having lived through that, it taught me first hand what it feels like to be stared at.  Now, I always make a point, if my eyes innocently land upon someone who is different in any way, to give a friendly smile, then never look again, and let us both continue on with our day. That’s really all I wanted when I was going through it.

With my kidney disease, no one can tell I’m afflicted, and when/if I verbally tell them, I’ve only been treated kindly. I guess the only thing I would impress upon people, if I could, would be about the importance of organ donation. To save someones life with yours or your loved ones organs is a heroic act.

Miggy:  What is the biggest lesson you’ve learned in regards to your kidney condition and have a child with special needs?

Lisa:  I learned babies are not as fragile as you think- boy, they can be quite tough! Like many other parents of kids with special needs, I learned the hard way the importance of advocating for your child– for trusting you gut, and being respectful but firm with doctors. I think it’s important to share that with other unassuming friends and family, that they too, should be quite direct and open with their doctors. I learned that when you receive care that you are unhappy with, hospitals have a “patient advocate” or something similar, to mediate and fully resolve your complaints (or compliments). I learned the saying, “I’ll be happy as long as the baby is healthy,” can actually be hurtful. There is boatloads of happiness with a baby who isn’t “healthy”.

With regards to my disease, I’ve learned many lessons along the way. The biggest by far was the one I recently learned, that phew, my body will do what it wants, when it wants; that it truly is out of my control. That’s a tough one. The way I’ve learned to live with that is to prioritize, and actively work towards achievable dreams, today. The focus it gave me is a gift.

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