FLASHBACK FRIDAY – From November 2007
One day at a time. Those five little words have served Kim and Gloria Morris very well in their role as parents. Already the parents of 10 year-old Josh, Kim and Gloria added a baby girl to their family with the birth of Tara Lynn Morris on December 30, 1987. Gloria describes Tara as a “happy and healthy baby”, and even her pediatrician described Tara as “perfect”. Within a few months, Tara would begin missing her developmental milestones causing her pediatrician to become concerned. At Tara’s six-month checkup, her pediatrician referred Tara to a neurologist.
Following a CT scan, the neurologist was able to confirm a diagnosis of alobar holoprosencephaly. The neurologist informed Gloria that Tara would have a very poor quality of life, and he recommended that Gloria keep low expectations for her development. Although Gloria is now a very active member of an online support group for holoprosencephaly, Kim and Gloria didn’t have the internet as a means for research in the way that we have today. This was 1988–before the internet–and the means for obtaining information about medical conditions was limited. Kim and Gloria were given some written materials about HPE; however, those materials were frightening. Without a handbook to guide them, these devoted parents began to live by the motto, “One day at a time”.
As an infant and toddler, Tara received early intervention therapies. At one year of age, Tara received a g-tube following a hospitalization for dehydration. At the age of 11, Tara required surgery to correct scoliosis. At 17 years, she had her gall bladder removed. In 2001, Tara began to have seizures, and those seizures are very well controlled with medication. Overall, Tara has been very healthy.
Even as an infant, Tara has always been a very social girl, and she loves for people to talk to her and give her attention. Tara also has a very special friend in her life named Tom. Just the mention of Tom’s name brings a huge smile to Tara’s face. Tara is surrounded by the love of her family–not just her parents and brother, but also by her extended family of aunts, uncles, and cousins.
At 19 years of age, Tara is now a young woman living with holoprosencephaly. Adolescence brings with it different challenges, special opportunities, and new concerns. Kim and Gloria don’t have a road map to follow in their journey with Tara; instead, they are at the forefront paving the way for other parents who are just beginning this journey known as HPE. The road can be rocky and paved with worry; however, Gloria doesn’t hesitate to walk beside other parents by willingly sharing her experience and friendship.
Tara is defying the odds. Kim and Gloria have defied the odds also with a strong marriage that has lasted over 30 years. The description of happy and healthy as an infant still applies today as Tara has grown into a happy and healthy young woman surrounded by the love and support of an amazing family.
An Essay on HPE: Does Tara Enjoy Life?—YES!
Introduction (written by Melissa Lane): This is a story/essay about my cousin, Tara, who has Holoprosencephaly (HPE). My aunt Gloria was asked by a friend of hers, Leslie, to write an essay on Tara. Leslie has a son with HPE. Leslie has been in contact with a doctor who is interested in learning more about individuals with HPE. The doctor originally asked Leslie “Does Sam [Leslie’s son] enjoy life?” Leslie typed a letter back stating that he does enjoy life and explained why and how she knows that he enjoys life. After Leslie wrote to the doctor, she also asked Gloria to write about Tara. Gloria asked me to read what she had written and add or change things as I saw fit. I agreed to help Gloria with the essay, because Tara is a big part of my life and gives me inspiration to help other individuals with special needs. At this time, I need to also give my mom, Marie (Tara’s aunt, of course), credit in helping with the essay as well. My mom helped by giving ideas of things that should be included in the essay. My (and Tara’s) aunt Sandy also helped to accurately recount the medical intervention around the diagnosis and following medical information. The essay is, in my opinion, a much longer and more elaborate answer than the original question requires. However, Tara is 18 years old and we found it difficult to answer this question without starting at the beginning…
Tara Lynn Morris
Written By Gloria Morris
Edited By Melissa Lane
Tara was born on December 30, 1987 and was a happy and healthy baby. In fact, her doctor, Dr. Kramper said she was perfect. We took her home and enjoyed having her as a new addition to our family. She made our family complete. Tara was a happy baby and had no health problems, but at her three and four month check-ups, Dr. Kramper starting having concerns about Tara’s development. Dr. Kramper explained to me, “Gloria, you are holding her head too much. She has to hold it up herself.” In response, I told him that she couldn’t hold her head up and that I had to hold it up for her. Dr. Kramper’s concerns with Tara’s development only increased by the time Tara was six months old. At the six month check-up, Dr. Kramper referred us to a neurologist, Dr. Edelman.
After meeting with Dr. Edelman it was decided Tara needed to have a CT-scan. Shortly after the CT-scan was complete, we scheduled a meeting to discuss the results. Kim, Tara’s dad, had to work and so I brought my sister, Sandy, with me to the meeting. During that meeting Dr. Edelman informed me and Sandy that Tara’s brain hadn’t totally developed. He diagnosed Tara with Holoprosencephaly (HPE). Dr. Edelman then went on to inform us that Tara would have a very poor quality of life and to keep the expectations of her development low. Both Sandy and I were shocked. I started crying and while holding Tara, also leaned over to give Sandy a hug. We all returned home and I now had the job of telling her dad and her brother, Josh (who was 10 at the time). Kim and Josh were in the living room. I wanted to tell Kim first and alone, so I had to hold it together until Josh left the room. After Kim and I were alone, I broke the news and he took it pretty well. We decided to tell Josh together and he also took the news well. Later, we were given some papers about HPE. The information in the papers scared us because of the secondary problems and diagnoses that many children with HPE can have. It made me grateful and happy that Tara is who she is. Tara was healthy and looked like any other typical 6 month old baby. Due to the limited information about HPE at the time, those papers were about all the information we were given. How weird to hand papers out like that. It was not at all what we expected.
As a baby, Tara cried and cooed like any other typical baby. Tara has always liked attention and liked people to talk to her. She has always smiled at familiar people, unless she is upset with them. Oh yes, I said upset! Tara is very good at letting you know when she is unhappy with you. She will refuse to look at you and will, in fact, turn her head or close her eyes if you try to get her attention and she is mad at you. Here are some things that can make Tara mad: if she has not seen you in a long time and she is used to seeing you often, if her dad and I leave her with a babysitter and do not say good-bye first, if she is watching a movie and it is over and you do not change it fast enough, or if she does not like the movie you have chosen for her.
Now, back to Tara as a baby. Unlike Tara being typical in her social development, she has always been atypical in her physical development. This includes eating. While most babies eat 6-8 ounces every four hours, Tara would eat no more than 6 ounces every five to six hours. When we progressed onto baby cereal and baby food, we found this to be a difficult task for her as well. Feeding her with a spoon was a lot of work for both Tara and me. As Tara got older, the doctors worried about her weight. Shortly after her diagnosis, they wanted to give her a g-tube, but I said no. I didn’t understand or think that her weight was a big problem. In my eyes she did not look skinny, so we went on like usual and Tara would drink 6 ounces of formula and then eat some food eventually. Although feeding her was stressful for both of us, I continued to try because I needed her to eat or the doctors were going to insist on putting in the g-tube. At one point in time, we found a feeding bottle called an enfa-feeder. It looked like a big fat bottle and had a large hole in the nipple, so Tara drank her food. At first this seemed like a blessing because drinking had always been easier than eating off a spoon. Tara still tired easily, but we were getting by.
Tara also did not meet developmental milestones like holding her head up on her own, crawling, sitting alone, standing, and so on. Tara got sick with flu-like symptoms and was hospitalized just before her first birthday because she was dehydrated. During her stay at the hospital she got the g-tube. Tara is still tube fed to this day and no longer receives any food orally other than tastes of things every now and then.
As Tara grew, her personality grew with her. Tara had a Birth-to-3 Program in Wisconsin, which included Speech Therapy, Physical Therapy, and Occupational Therapy. Her cousin, Melissa, would often come and stay with us for a while during the summer and help keep Tara entertained during therapy. Speech Therapy included communication devices as well as oral stimulation. Although Tara has the g-tube, we still tried to give her some tastes of food to stimulate her mouth. Tara absolutely hates people to touch her face and her head. When the speech therapist would use the Nuk brushes on her face and mouth she would make awful faces. As she got older, we worked on communication in speech. We worked with Tara to make choices. Tara mostly communicates with cooing and makes limited different vowel or consonant sounds. When Tara was younger, she did at one time use words like: no, go, sad, mad, hi and mom. As the time moved on, most of the words slowly disappeared, but every now and then we still hear hi or mom.
Having said that, it is not to say you cannot understand her mood by the sounds she makes or her facial expressions. To make a choice, Tara will look at which ever item she wants more or will make a happy or sad face if she is only give one item to look at. In many aspects, Tara is very opinionated. She has favorite movies, people, toys, and other things like that. During physical therapy, Tara worked on sitting, holding her head up, arm strength, and other large movements. This was one area where Melissa helped quite a bit. Melissa would talk to her and be silly with the toys to try to get her to hold her head up and turn over, or just not cry when the therapist stretched her muscles. Part of having therapy was so that we could learn what to do when the therapists were not here. Tara, however, has never liked to work with me. I am MOM, and that is it. If I tried to stretch her legs, she would just get tighter and mad at me. She would, however, let Melissa stretch her legs.
Tara knows what roles she wants certain people to have and does not tolerate changes. She will let her cousin, Melissa, do her hair, but no one else. When she sees her aunt Sandy come over with a bag or package of any kind she thinks it is for her (Sandy does often have things for her, but not every time). There are certain movies she will watch for certain people. When she spends the weekend with her aunt Marie and uncle Mike and is crabby in the evening, she will watch any movie her uncle Mike puts in the VCR or DVD player. Tara adores her cousin, Tim (who is 4 months older than her) and is very protective of him. If anyone hurts him, is mean to him or she thinks someone is being mean to him, she gets upset. She also loves her uncle Mitch and thinks he is funny and laughs at whatever he does. Tara likes to sit and watch movies with her cousin Travis and will watch a movie he chooses. Tara’s aunt Kris, uncle Brad, and cousin Kelsey live down the street and will often stop by when they are out for walks. She likes to smile and “talk” to them when they come over. Tara is also fond of all the other aunts, uncles, and cousins in her life including: her uncle Larry, aunt Val, cousin Allayah, uncle Ken, cousin Becky, cousin PJ, uncle Paul, and uncle Cory. She enjoys seeing Fran, Grandma Donna, Grandpa Morris and Great-Grandma Morris. Tara does not see all of her extended family as frequently as those that live very near to her, so she is not as close to them. Tara knows who all of them are and gives them big smiles when they do come to visit.
Tara seems to understand social interactions and situations. Tara loves life. She has never been one for long naps–a fifteen minute cat nap was enough for her. I always said she was afraid she would miss something. Heaven forbid that would happen! Tara will often stay with her aunt Marie and uncle Mike for the weekend. If we tell her we are going away to stay at hotel (a.k.a. having fun without her), she will give her aunt a hard time. Tara gives her a hard time by being more irritable for the entire weekend or will not sleep during the night. When Tara gets upset, she can make herself throw-up, so you always want her to at least be content. There was one weekend when she was with her aunt Marie, uncle Mike, and cousin Tim and was done hanging out in the living room with aunt Marie. As I said before, Tara did not meet milestones like sitting or walking, so as she grew moving her around became more difficult. Tara needs two people to move her in and out of her wheelchair, or a very strong person. That day, Tara was on the floor in the living room and was ready to go back to bed. She started whining to let Marie know she was done. However, her uncle Mike and cousin Tim were trying to fix Tim’s car and were messy. Marie called Tara’s uncle Mitch, who lives down the street, to come and help move Tara. During all this, Tara continued to whine and be upset. Her aunt Marie explained to her “Uncle Mike and Tim are working on the car and are messy.” She then explained, “Uncle Mitch is coming to help.” Tara immediately calmed down and waited for Mitch to arrive. Tara understands “wait” in other situations as well. If her show is done and you are going to another room to get one and say you’ll be right back, she will watch whatever is on TV until you get back. Sometimes her cousin Melissa will try and get her to watch a new movie and will tell her she has to watch it for at least a few minutes before she decides if she likes it or not. Most of the time she will only tolerate watching the beginning if Melissa stands next to her and holds her hand. Sometimes she will finish watching it and other times she decides she does not like it. Tara also hates going to the dentist (as most of us do) and recognizes the building and route to get there. She will start whining as soon as she recognizes where they are going. Tara remains upset until we are on our way out the door.
Tara is always aware of what is going on around her and doesn’t miss a thing. Tara is very social and loves going to school. Summer is her least favorite season, because she has to stay home. Tara likes to go for car rides and goes on them every weekend. In fact, she does not tolerate short trips. Her aunt Marie and uncle Mike live down the street from us and before and after we leave their house we have to go for a car ride or she is very unhappy with us. Tara is also a big flirt. She adores most of the men in her life. Some examples include her immediately looking at and smiling at boys and men when they come into the room. As you remember earlier, Tara will watch whatever movie her uncle Mike puts in, even if she just refused to watch it for her aunt Marie. Tara will watch movies for her dad that she won’t watch her me. Tara thinks it is hysterical when people drop something or accidentally get hurt. For example, if we are on one end of a grocery aisle and someone drops something at the other end, Tara will start laughing. Tara will also laugh when someone says “ouch” or “oops“, whether it is good or not. This how we often get her to smile for picture. We will say “oops!” For some reason Tara also thinks it is funny if you sing the ABC’s. This is the only song she thinks is funny and she always has thought it is funny.
A running theme though this story is movies. Tara loves to watch TV and especially movies. Tara has very limited control over her arms and legs. This, of course, limits the number and type of activities she can do by herself to only being able to observe her surroundings. Due to this limitation, watching TV/movies is a big part of her life. Along with having favorite movies, she has picked out favorite parts in movies as well as parts that she doesn’t like. If she does not like a part, all you have to do is fast forward until it is past that part and she will watch the rest of the movie. For instance, in the movie “Wild America” she doesn’t like it when the bears wake up and growl, also in “Mrs. Doubtfire” she gets upset when Mrs. Doubtfire is going to the bathroom and the son comes in.
During this last year at school, Tara developed a friendship with another student. Tara now has a boyfriend who is great for her and to her. You should see the way she looks at him and the way he looks at her, it is cute. Her boyfriend’s name is Tom. During the school day if Tara is upset Tom can always cheer her up and make her smile. When Tom first asked if Tara and he could go on a date I was concerned with his intentions. I talked to Tara’s teacher and asked her what she thought. Her teacher felt that they were good and he just likes to talk to Tara. Tara’s teacher was willing to chaperone the dates. Most of the dates include going bowling. Tara either uses a ramp and hand over hand to push the ball off or Tom has her kick the ball. Tara and Tom graduated together this last June. Tara graduated from 12th grade and Tom graduated because he is 21 years old now. Tara is able to continue in school until she is 21 years old as well. This summer Tara went to summer school. Even though Tom is now 21 and is no longer enrolled in school, he went every day (except the first day) to be with Tara. He walked several miles to and from his house to volunteer his time and help with Tara.
In order to help with communication, Tara has a Step By Step (voice output device). I put a message on every morning and school changes the message pertaining to her school every day. As Tara has limited control over her arms/hands she uses a head switch to activate the message. She doesn’t always want to hit it, but knows how. She typically does well when she comes home from school, because she knows that I will not let her watch TV until she “tells” me about her day.
Tara, as we have been discussing, has a strong personality and can at times be very stubborn. One great example of this is when I wanted her to help make her dad some cookies. We have equipment that allows us to hook-up electricity operated items to a switch for Tara to activate. One day I had set everything up for her to activate the mixer. With a lot of coaxing we had gotten the batter almost all mixed up. Tara was to the point that she only had to hit it one more time and we would be done. Well, by this point, Tara had decided that she had helped quite enough and would not move her head to activate the switch and mixer. I was not going to give in and I told her that she was going to stay in the kitchen until she helped finish mixing the batter. I went into the living room to watch TV and after about 5 minutes I returned to the kitchen. I told Tara how nice it was to watch TV. I asked if she was ready to finish with the cookies, but she refused to activate the switch. I again left to go watch TV. This time I left for 15 minutes and went back in. I said, “O.K. Tara hit the switch and you can watch TV.” With a little more coaxing, she finally activated the switch one more time. When she hit the switch she hit it really hard and looked at me as if to say “There, are you happy now?” She cracked me up and I told her what a good girl she was. Another adaptation we do is setting up her head switch to have her blow out her candles by using a fan. As an added bonus for Tara, she likes it when people sing the ‘Happy Birthday’ song and loves getting gifts. Other things we can do with the switches include play games with a special spinner, having her help with vacuuming, and when she was little connecting battery operated toys.
I hope that you have enjoyed reading about Tara. I believe this should give you a glimpse into the life of an individual with HPE. I guess, in short, the answer to the question of “Does an individual with HPE enjoy life?” would be “YES!” There is not a doubt in my mind that Tara enjoys life.
Conclusion (written by Melissa Lane): I know that every child is different, but children with HPE can enjoy life just as much as the rest of us. I believe they may enjoy different things than us “normal” people, but what they enjoy is not any less important or meaningful. I think that Tara has truly been a blessing in the life of any person who takes the time to meet her. Tara has an engaging smile and is typically a very happy young woman. I believe that Tara helped me to become the person I am today. It is because of her that I am in my chosen profession. I currently work in the Birth-to-3 Program in Wisconsin and help families get set up with therapies for their children and resources that can help them. Tara, Gloria, my aunt Sandy, and my mom Marie, all attended the HPE conference this year. It seems that Tara has made a big impact on the lives of many of the families that came to the event. Tara is one of the older children living with HPE in the United States. The HPE community is a small one that extends across continents. Although more information on HPE continues to be gathered each year, there are still many unanswered questions. Many children with HPE have secondary health problems, which keep them from being healthy. We have been blessed and Tara has had very few health problems. She has had more health problems as she has gotten older, but they are all managed well with medication. Tara is an awesome person and anyone who meets her would, and does, feel the same way.