When Doctors Say “Never”: What Every Parent Needs to Hear | Episode 148

Today we're bringing to you a story of love, of not giving up, and just of challenges, but yet there's still joy and beauty to behold. So doctors gave Susie Fisher a grim prognosis at birth. She would never walk, never talk, live independently, or have meaningful relationships. Born with severe brain abnormalities and the rare Joubert syndrome, she faced a lifetime of nevers. But her mother, Jane Fisher, refused to accept that Fisher. And today we are talking to Jane Fisher. Jane, welcome to the Bookaholic Podcast. Hi, Deidre, thank you for having me on. Yes, absolutely, absolutely. So we started off with just a little intro about your daughter, but just tell us, just like any parents that's expecting a child, you're anxiously awaiting the birth of your child. Now, did you have any indications that she would have any of these challenges? Maybe the technology wasn't there at the time to be able to tell you beforehand what to expect after the birth, or was it just upon birth that's when you got the grim diagnosis? Yeah, no, we had no idea. I had my daughter, a two-and-a-half-year-old, my daughter Beth at home, who I had a difficult pregnancy with. I had lost my father when I was pregnant, and it was a much more complicated pregnancy. But with Susie, there was no indication. I had a relatively uncomplicated, in fact, it wasn't even relatively, it was uncomplicated. It was without any issues, without any problems. There was no concern about any abnormalities in regard to Susie. So it was a total surprise. Wow. And how long did it take for doctors to discover all of these things once she was born? Again, Susie was just 51 this past July, so we're going back a lot of years. But when she was born, unbeknownst to any of us, she had certain anomalies, which in and of itself would have not really raised many red flags, but together the doctors were very concerned. For instance, she was born with extra digits on both hands. Her head was slightly out of proportion to her body. It wasn't as you could look at her and say, her head is so large, but the measurement showed. She had a very poor suck. She couldn't latch onto my breast. It was very difficult to feed her with a bottle. And again, all of these issues in and of itself would have not been a cause for great concern, but when you put it all together, she became very jaundiced. She was not following any light. They thought she was blind, actually, for the first three months of birth. And we had no idea, and I will explain this as we continue our conversation. We had no idea until this past 10 years ago that it was even Joubert's syndrome. Joubert's syndrome is a very new syndrome. My brother, who is head of genetics at University of Pennsylvania Hospital, happens to continually be looking at and searching for reasons why Susie had so many problems. And it was just diagnosed or it was just discovered 10 years ago. We thought all these years, etiology unknown. We had no idea what was Susie's or her problems. Wow. Okay. So we'll get to the actual Joubert in a little bit, hopefully. But so when you first heard the doctor's prognosis for Susie, what was the moment or the thought that made you decide, no, I'm not accepting that future? Again, I was 24 years old. I was so young myself. I had a two and a half toddler at home. But by when she was three months old, as I said before, we didn't know whether she had any sight. We knew that her, even at that young age, her developmental milestones were delayed. And we had gone to a world-renowned pediatric neurologist in New York City. And he did many tests and he began to tell us that she had some very grave neurological deficits. And chances are she would never walk. She would never talk. Her cognitive abilities were very damaged and she probably would not be able to function. And very gently and very gingerly, he began to tell me that it would be advised if I found a residential placement for her. He said, I had a two and a half year old at home. I had a husband. I probably had more children and her future was very bleak. I didn't know where to begin, but I knew that my baby was not going to a residential place. This was my child. And when I put her in my arms, it was love at first sight. I didn't see any abnormalities. And I knew that, I knew at that juncture that we could either buy stock in Kleenex and cry for the rest of her life or begin to fight. Absolutely. Absolutely. Sounds like most mothers I know, definitely. Absolutely. So you describe a lifetime of nevers that turned into possibles. What was the one, what was one of Susie's biggest breakthroughs that completely changed your understanding of what she was capable of? There were so many, but I'll go back to very early on. As I said before, we were told that Susie would never walk. She was missing three quarters of the cerebellar vermis in the brain. And just not to be too technical, but cerebellar vermis controls all motor movement. So for all intents and purposes, she was never expected to walk. And as I said before, I didn't know what fight meant. It wasn't Google, it wasn't a computer. I couldn't just Google how to start working with an infant. But there was such an old fashioned, I'm sure a lot of people listening don't know what a telephone book is. But I began research. I began to research where to begin, how to begin. And I found a, it's called infant stimulation. Today, it's very commonplace. You don't have to search in a telephone book. There's many, most large hospitals or communities know what infant stimulation is. But we found one, it was about an hour and a half away from our home. And we found, it was a facility in Hunterton Hospital, which taught me. We would go every morning. We had to be there at eight o'clock in the morning. And keep in mind, I had a two and a half year old too, that I had to get out of the house. And anyway, long story short, we worked and she went to infant stimulation and we worked on all those muscles and all those, I believe synapses in the brain that were intact. And we bombarded her with stimuli. And one of the greatest breakthroughs, she didn't walk till she was four years old. And one of the greatest breakthroughs, it was a very hot summer day. And one of the things with Susie, and you'll read this in the book, it's coming throughout. She always knew what she should be doing. She watched her older sister, who was probably her greatest therapist for many years. She always included her in play and there was language therapy and there was social skills. And she was probably her most influential therapist without even knowing it, just by being her older sister and including her. It was a very hot summer day and Susie did not want to crawl anymore. She was three years old and she was still crawling. And this is all in the book. We had finally found a panda bear or one of those pull toys, the toddler shoes. And it just so happened that those became her legs. That's how she got around. That's how she moved. The panda bear was stolen. Yes, it was stolen. We went on a summer vacation and it was stolen and Susie would not accept any of it. I think we tried every single pull toy out there, but she would not crawl and she only wanted her panda bear. Anyway, lo and behold, the only way Susie would go from one place to another is if I held her under the arms, as we do with children who are learning to walk. Keep in mind, she was three and a half years old and she was no lightweight. But that's the only way. She knew in her head that she wanted to stand up straight and look like everybody else and be in the walking position like everyone else. One day we were walking outside. It was, as I said before, a very hot summer day. We were walking back and forth and back and forth. And I live on a hill, so not so easy to go up and down. Anyway, one day one of our neighbors, he had come out to fix his garden and he put his hands out and he said, come on Susie, come to Uncle Sam. And there's those moments you never forget. I was holding her under the arms and she just moved forward. She took a couple of steps and it was a miracle. For all intents and purposes, no one knew how this child was able to walk. And from that moment, all the neighbors came out. My daughter ran to get my husband and it was such a big block party that Susie took a few steps. And that was only the first of many stories that she defied the odds. And when we went, we kept going back to the doctors and they were amazed because she not only learned to walk, but she was part of Special Olympics and she was in the track race. She was part of, and my son, which I'll tell you about later, he became her coach. She just became, she played tennis. She played soccer. She not only walked, but she went far and beyond any expectations. In fact, quite frankly, she defied her sins in life. And she always did it with this wonderful spirit, this ebullience. And she never say never when it comes to Susie. Wow. That's amazing. That's amazing. And my next question is like looking back over the five decades, what would you say has been the hardest part of this journey, but, and has yet what has been the most unexpectedly beautiful. And I feel like her walking was unexpectedly beautiful, but I'll let you of course answer this. Part of the journey as a parent, you, you're always trying to balance and this is the, it still is the hardest part. Susie's buzzword is independent. I want to be independent. I want to be, I want a life. I want to do what everybody else does. And part of the difficulty in raising a child with special needs is that you want to keep them safe and yet you need to let them fly. And with any child, that's always a challenge. But with Susie, with the children with special needs, with Susie, it's, it becomes even more complicated because for instance, she wanted, she saw my daughter and my son go to camp. And as I said before, she always knew what she should be doing. And, and this is all in the book. It's really a wonderful story, a wonderful chapter. And she said, came to me one day, she says, I want to go. I want to go to sleep away camp, mommy. I want a life. I want to do what other people do. And I said, Susie, Susie and I were connected at the hip. We've connected at the heart. We were connected. How was I going to let my child go leave me? How would she survive without me? So the hardest part for me was to let her go. And it was at first I said, no, you, I wouldn't survive without her. First I said, it's not possible. And then my husband actually had said to me, it's not about you. It's not, she deserves a chance. She deserves a chance to try. So we did find a camp where children with special needs. And it was a camp in Utica, New York. And when I sent her file to the camp director, he basically called me and he said, you know what? I think that she's too low functioning for this camp. I don't think it's a good fit. And why don't you, and he gave me the names of some other camps. And I said, you know what, Jim? And she only, she, I had researched this camp and I knew what, how excellent, what an excellent facility. I said, Jim, do me a favor. Let me come up with her, meet her in person. If you don't think it's a good fit, I will leave. We'll shake hands. We'll part friends and I will never bother you again. Okay. It's an expense. I don't know if I want you. I said, listen, it's my money. It's my time. Give her a chance. Give her, just meet her. And that's what we did. We went up and we spent the day there. And as soon as, when she was, Susie's strength, Deidre, has always been her social skills. She is the most charming, wonderful, you fall in love with her. To know her is to love her. She's truly God's child. He is an angel on this earth who was placed here to make us all better people. Yeah. And we visited the camp. And as soon as she saw Jim, she says, hi, Jim, I'm Susie Fisher. I am so looking forward to coming to Camp Northwood. She said, and whoever she met, we went throughout the camp and she would make, she'd put her hand, she always puts her hand down, shakes hand and says, hi, oh my goodness. I always wanted to I can't wait to get here to try. And this is how she spent the day from person to person. And it's sincere. So Susie doesn't know how to manipulate. She doesn't know how to lie. She doesn't know how to deny. It's her level thinking. Absolutely. It's all pure and from her heart. And when he took us back to the train, he said to me, not only do I want her to come, he said, but thank you so much for not letting me listen to paper and pencil test reports. He said, you have to really meet her to get to know her. And I said, I've heard that over and over again. And she spent 15 years at Camp Northwood. The hardest thing to answer your question, the hardest thing for me was to let her go. The hardest thing for me, you wouldn't have wanted to be with me that summer because I was a wreck until I knew she was okay. But how long was the camp? Was it like a week or was it a month or? It was seven weeks. Seven very long weeks for me. That is long. We did have a visiting day. We did go out and we visited her. I wanted to only send her half of that time. That wasn't an option because they felt that it takes the child that long to acclimate. But she went back for 15 years and they were 15 of her happiest summers. That sounds amazing. Yes, she's amazing. Yes, absolutely. You said this book is not just about Susie, but about the resilience of the human spirit. So how does Susie teach you about resilience? I watched Susie every day of her life fight to survive, fight to overcome, to fight the challenges. It not only taught me, it taught my whole family, my other two children. I would like to believe that they would have been just as wonderful as they are. But she was our teacher. She was our mentor. They watched her. Nothing came easy, nothing. And she had to get knocked down so many times. And the resilience to try to get up again was overwhelming. But she continued to fight her sentence in life over and over again. And the book goes into when she was in middle school. And we all know how difficult middle school girls can be. And I had become very involved in the world of special education by that point. I had started a PTA for parents and professionals for special needs children. I had started a social. I was enmeshed in the whole field of special ed. I was going back to my master's as teacher of handicapped. And I was actually consulted by the child study team who had said to me, Susie is really not being included. She's really an isolate. She's really alone. And because I believed in inclusion and I still do, Deidre, I don't want anyone to think I'm not a proponent of inclusion. If it works, it's wonderful. But I also have learned that it's not a one size fits all model. And she, this wonderful psychologist said to me, just follow her. Follow her in the shadow one day and see how lonely she is. And I did. And I watched her in the lunchroom. There was a group of girls to the right and a group of girls to the left. And she was in the middle. She was alone. No one spoke to her. And I said to the psychologist, we just have to do more. We have to do sensitivity training. We have to assign a buddy for her. We did. We did. The buddy came by and she tapped her on the hair. Hi, Susie, how are you? A very nice young lady. Did her due diligence by saying hello. And I watched her go through the whole day really lonely, never complaining, trying to look strong, holding her head up high, but not having a friend. And it was until the end of the day that when I picked her up, she was so glad to see me. And I had said to her, Susie, would you like to visit ECLC, which is a school for special needs children? I had arranged for her to have an intake at the school. And she came out and she said, yeah, I'd really like that, mommy. And when she visited them for the day, she came out and she came by. Mommy, please let me go here. I could be a cheerleader, mommy. I could be in the club. I could be in I could be in the Lions Club. I can go to a prom. It was her world. And so, of course, through my own foolishness and through my own need to believe that every is a God-given right to be included. Yes, it's her God-given right to be included, Deidre, but it's a God-given right to be included in a world that embraces her. Absolutely. Absolutely. Absolutely. We all pick our friends and pick our world. Why do we have to feel that our children must fit into our world when, in fact, our world doesn't really include them? They at best tolerate them. Absolutely. Absolutely. Absolutely. Wow. So, gosh, this story is so powerful. So excuse me if I seem to just it's just so much here that I might have to have you come back on again. Maybe. Yes, there's a lot. Of course, there's millions of people who have special needs children. I'm thinking about one of my friends who has a special needs child is autistic. So many parents today receive difficult diagnoses for their children and feel lost. What advice would you give to a parent who's just heard the words, your child may never whatever. And I feel like autism is running out of control in the country. I don't know why. So what would you say to those parents? Yes, I would say, and Susie has been brought up with this, never say never say can't. There's in fact, Susie, if she were here, she would tell you that my mommy never lets me say can't because there is, you have to be an advocate. You know your child best. It's a fine line we walk. I've been told over and over again through the years that I'm unrealistic. Many years ago, I wanted to introduce Susie to the computer. This goes back probably 20 years ago. And I was told by a child study team member that a keyboard, she said, I would be lucky if Susie learned to tie her shoes. And I was so aghast. And I said, I know because I'm like rolling my eyes right now. I'm giving the side eye. I said, do you even know her? I said, have you even tried? Did you have even tried to sit down with her and show her a keyboard? But as a parent, you know, your child. And yes, there are times you have to compensate, you have to modify, you have to be willing to accept the fact that, and we have, there are other examples I can give you. One year we tried to teach Susie to ride a two wheeler. She wanted to ride a two wheeler. It was, then I will tell you, you get to a point and you have to know the difference. You have to, as you're a mother, you know your child best. We realized that this was, it was going to be very dangerous, if not impossible. So we bought a adult tricycle. I don't know if you've ever seen them there with a three wheeler adult tricycle. And she felt, wow, this is great. I'm riding an adult bicycle. So there are times you have to accommodate, but there are also, but before you do that, you have to make sure. And somehow it's instinctive, Deidre. You'll know when. I will say this. I went on to get my master's and I worked on a child study team for 25 years as a learning consultant. I've been on both sides of the table. And what I will say to parents out there, you don't go in with guns loaded. You don't go in fighting because you have to believe that anyone who's working in this field is working because they want to help children. You have to go in or at least hoping that you're on the same team. And I don't believe coming in combative will resolve any issues, but I do believe in advocacy. And you will know when it is time, you know, to make sure that your child gets the services that they so deserve. Right. Absolutely. Absolutely. Now what you have three children total, you have two daughters and a son. Yes. And how did you, including your husband too, how did you balance your relationships with your other children? Because I can see to where maybe if everyone was always focused on Susie, how would the other children feel? How did you all manage to give every child in your family the attention that they needed to thrive with Susie in the home? And I know everybody in your family, it sounds like everybody was on Susie's team, but then your other children had to grow and learn too. How did you handle that? With a lot of difficulty and a lot of guilt. I have to say, and I'm very honest in my book. You can't write a book like this and sugarcoat it. It has to be forthright and it has to be honest. I tried very hard. As I said, my older daughter was very much part of Susie's therapy and life and I always incorporated her, but I was fortunate in that she always wanted a baby. It wasn't that I had to force her to play with Susie. She always wanted to do that. It was an interesting, I go into this of course in the book, my husband, we had the two girls and my husband did not want another child because he was afraid. We didn't even know that there was a genetic connection. But years later, I always wanted a third child and I think for a lot of reasons. But we went to University of Pennsylvania, we were told there was, we went for a lot of genetic testing. We were told there was no genetic link. There was no reason to believe that there was any genetic connection with all Susie's issues. And we didn't even talk about this. When Susie was 24, she was diagnosed with end-stage kidney failure. We had, Susie had two kidney transplants and thyroid cancer and we had no idea that was part of the Gilbert syndrome. We just were told it was random bad luck. So we did, years later, we had my son. It's a 10 years difference between my older daughter, Beth, and my son. And it's a seven years difference between Susie and my son. And we had my son and it was, it was such a joy because Susie, and it gave Susie an opportunity to be a big sister for, which was, she adored him. Later on, there were issues because as the gap grew more narrow, my son began to do things that Susie couldn't do. So ride a bike. And his academics succeeded Susie by the time he was seven, eight years old. It was constant balancing in my family. I was always aware. I try, if anything, I'll be honest with you. The person I neglected the most, and there's only 24 hours in a day and only seven days a week. I was working full time, taking care of Susie. My mom was elderly and needed care at that time. I became her caretaker. The person that was neglected the most, and I give him full credit for this, was my husband. There wasn't a lot of time to devote to my marriage. There was a lot of rocky times for both of us. It's amazing. We were just, we just were together 54 years and it's truly amazing. There were many times I know he wanted to run and many times I wanted to run, but we had very little time for one another. And you know, I credit him for being, as he would say, many years ago, I said, it's amazing we're still together. And he said, it's because I'm such a responsible person. And maybe there's some truth to that. I'm sorry. Go ahead. I was just going to say, the other children, it's very important because years later, I've asked them, now that they both have children of their own, I've asked them, do you feel that there was something I could have, should have, and both of them have said, mom, we understood you gave us a lot of attention. You really did. I would, one of the things, and I'll let Lee with this last point, I would make time, we would have our own time together. I would get a babysitter for Susie and I always made time. I had our one-to-one individual time, whether it was going to a movie or going bowling or just going to lunch together. I always made sure that I had that one-to-one time with each of them. And I think that's crucial. Absolutely. Absolutely. Let's touch a little bit on the Joubert syndrome and that in the scope of time, it is a relatively new condition, disease that's been discovered. And I know you said your brother is a geneticist. What in the world, why did it evolve? Why did it come up? Does your brother or other medical professionals know why it is what it is? Yes. Where did it come from? Yes. Oh, so as I mentioned before, Susie at 24 years old, and this is all in the book and you don't want to belabor it, but she was diagnosed with end-stage kidney failure. And this goes back in December of 99. And I had said to my brother at that time, is there a link? Could there be something genetic? I know with Down syndrome children, there's problems with the heart, kidney. And my brother said, Jay, we just don't, I don't think you went for genetic testing. You and Al, Al is my husband, had all kinds of genetic testing. There's no reason to believe. And Susie had her first kidney transplant in December of 99. She then went on in July of 2013 to have her second transplant because the first one would fail. She had thyroid cancer in between transplants. And in between this, Deidre, I just want to add this in aside, she was an amazing, she touched everybody's heart. She was so sick, but she was more worried about the, we were in, she was on dialysis and she was only 24 years old. Most people in the dialysis centers are much older. She would walk in and she'd say, hi, George, did your daughter hear from college yet? Or she would say, hi, Joe, how was your gout today? She has this uncanny ability to remember details. She knew everybody's, she knew everybody's story. And the years went on and the doctors were amazed at her. About 10 years ago, my brother called me and he said, Jay, I want you to take Susie for an MRI of her brain. Now Susie has had CAT scans and she's had numerous, oh, through the years, so many tests. And I said, what, what are you talking about? He said, just do it. He said, there's a new syndrome that's just been identified in Canada. As a matter of fact, he said, it's very rare, very rare. Both parents, you and I would have to have the gene. If one parent has it, it's a non, it's a non-starter. It's both, it's an auto recessive gene. He said, but I'm going to bring you all down to be tested again. And I want you to have an MRI of her brain because the defining characteristic, it looks like a molar tooth and it's in, it shows up in an MRI of the brain. So of course we ran, we did the MRI and lo and behold, it was so clear. She had this very clear picture of this molar tooth in her brain, which no one really identified because there was no reason. He brought my husband and I down and Susie and lo and behold, we had the gene for Joubert's and so did Susie of course. And it turned out, Deidre, that Susie is the oldest one in the world that's known to have Joubert's syndrome because I'm sure there are other people before Susie, but it wasn't identified. The medical community. Yeah. Yeah. And particularly it's been a lot of research done now at Wash U. They're watching her to see how it all unfolds. It does lead to all the developmental disabilities that Susie has. It does lead to kidney failure. Susie has a very rare, I couldn't go into everything in a podcast, but she has a very rare eye condition called congenital oculomotor apraxia. It's known to be very commonly found in the Joubert's population. So after all this time of being told etiology unknown, we've now been told that all her problems are a result of Joubert's. And the reason I feel so strongly about getting this book out there, it's not for fame. It's not for monetary remuneration. It's to help educate people because number one, I feel that we can, it's an, as you said before, an inspirational story that helps everyone to understand and to be motivated to overcome life sentences. And it also educates people about Joubert's because you can be tested for it. You can, the chain can be isolated. Yes. Yes. Great. Oh, fantastic. So now that Susie's story is out in the world, what do you most hope readers will walk away with after reading, if you knew Susie? My greatest hope, of course, as I said, is to educate and to help people understand the resources that are out there. There are so many levels to Susie's story in life, not only her developmental disabilities, special education, all her medical issues, which we haven't even, there's just no time. I touched upon the importance of organ donation, how it saves lives, the importance of the right medical care when you have so many issues as Susie's had, and I would go into that in the book. And of course, the importance of genetic counseling when you're planning on becoming pregnant or having, I just think Susie was put here on this earth and I've seen her do it over and over again. She's been put here on this earth for us to learn lessons. And what I hope the takeaway will be at so many levels, so many different kinds of lessons that people will learn from living and learning about and reading about her life. That's my greatest hope. Wow. Jane, I really appreciate you joining me today on the Bookaholic podcast. I know a lot of my listeners will get a lot out of this interview. And just thank you for sharing your family's story. And thank you for Susie. Thank you so much for having us. Please go on Amazon, our Barnes & Noble websites, you can find it there. If you knew Susie, pushing past the boundaries of never. And I just hope you'll be as inspired and get to know my angel. Yes. And we'll have all that information. Oh, excuse me. So we'll have all that information in the podcast show notes and in the video description box on YouTube. Thank you, Jane, so much for joining. Thank you, Deidre. Thank you so much for having me. God bless.