Cognitive Age: 8
Therapies: Occupational, Physical and Speech therapies, plus social work
Schooling: K-2nd in self-contained program, 3rd-5th full inclusion, entering 6th this year
Siblings: Tyler (18), Lucas (13), Zachary (5) and step-siblings Nikki (18), Allie (17), Timmy (15), Hanna (13)
Parents: Krista and Tim Higgins
Kabuki Symptoms: Aaron presents with the typical Kabuki facial features. He also has a hearing loss, low muscle tone, and developmental delays. He has a Chiari Malformation and a tethered cord, which may or may not be Kabuki related. Aaron does not have any kidney or heart defects.
Aaron’s Story: Aaron was Krista’s third child, and everything seemed the same as her previous experiences. There was no indication that something would be wrong with Aaron, everything seemed very normal. Until he was born. Aaron was very floppy and had trouble with feeding. Krista mentioned this to the nurse 24 hours after Aaron was born and they whisked him off to the NICU. There, he was diagnosed as “Failure to Thrive” and Krista was told it looked like he may have a syndrome. He spent a few weeks in the NICU before being discharged.
Initially, Krista didn’t see it. She is a special education teacher, and when the doctors were saying that something was wrong with him, her brain ran through every scenario possible. The doctors were vague, because at the time no one knew what Aaron’s diagnosis would be. Krista didn’t see what anyone else saw. She saw a perfect little baby who needed his mom, and thought she would be able to “fix” him. Even her family said he looked sickly and was close to death the first week, but Krista didn’t. Acceptance was a difficult process for her, “I was in denial, I just didn’t see it. I saw this perfect baby that needed me. With every doctors appointment and then his first surgery at one, the realness started to set in. The idea of my child having surgery was beyond my ability to comprehend. Little did I know that that my life would never be the same,” she says.
Fast-forward to today and Aaron is a thriving 11-year old boy. Krista says she is used to the multiple appointments per month (or week), but the nervousness and anxiety that comes with surgery never goes away. At age 8, it was discovered that Aaron had acquired (or developed) a Chiari Malformation, which required a decompression surgery in July 2017.
According to the National Institute of Health, "Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation." The most common type of decompression involves the surgeon making an incision in the back of the head and removing a small piece of bone at the bottom of the skull. This creates more space for the brain and gives cerebrospinal fluid more room to flow properly.
Despite having 4 surgeries prior to this one, anxiety and nervousness crept their way into Krista’s life. She describes having anxiety attacks while teaching, driving and even sleeping during the 6 months they waited for surgery. “It was torture,” she says.
It’s now a year after the decompression, and during a routine check, they discovered that Aaron’s spine might have re-tethered. An emergency MRI has been scheduled in about two weeks. The results of the imaging will determine if Aaron’s spine is the reason for his increased incontinence and bowel problems.
Like many families, it seems as if things are in the clear and a break is in sight, when Kabuki rears it’s ugly head and brings on the unexpected. Accepting that this will happen for the rest of our lives is no easy feat, it very often leads to anxiety and depression, but Krista has a great outlook on how to approach it, “Right now in my life, I am trying to accept that Aaron will always have medical appointments. There may be new problems or needed surgeries along the way, but I am trying to live in the moment and make the best of each day, because nothing is off limits for our kids. Aaron has taught me to find pleasure in the little things, to find the joy in everything. How can I be sad when he happy?”
It’s a very hard thing to look at your Kabuki kid, who does nothing but bring joy to everyone around him, and feel sad at the same time. Krista attributes her strength to God, her friends and Kabuki gatherings where she can interact with other Kabuki parents.
Aaron’s Favorites: “Aaron has always had a love for books and stuffed animals. His passion for the last four years has been anything classic Disney. He collects old Disney VHS movies. He favorite is Lady and the Tramp. He has an old and wise soul. He loves to travel, go out, and shop at thrift stores to look for old Disney treasures. He dreams of a day he can go to Disney world.
Aaron’s Relationship With His Siblings: “Aaron’s siblings are patient with him most of the time. His brother Lucas is his biggest advocate, he helps him get around, tutors him in schoolwork, and makes sure other kids don’t bully. Aaron is very close with Lucas. The most difficult relationship in the house is between Aaron and his 5 year old brother Zach. Zach likes to antagonize and pick on Aaron, and Aaron doesn’t understand that he is only five. Aaron loses his patience with Zach quickly.
Advice for Kabuki families: “My advice is advocate for your child. He you have questions ask them. Get second opinion from other doctors he you have concerns. There will be good days and bad days. It is okay to cry and fall apart (and lose your mind), these are our babies’ lives. When you need help or a shoulder to cry on, find someone you trust and talk, don’t hold it in, or it will eat you up. Our children need so much from us, but you must take time for you. That might mean going to the gym, a date night or friend night biweekly. Maybe getting your nails done or reading a book. You have to take care of you or you will not be strong enough for your child. Lastly, remember it has an impact on your other children too. It’s okay to spend one –on –on time with your other children aside from your KK. They need you too; they worry about their KK sibling too.”
Advice for parents of “typical” children: “I think at times is it is difficult for parents of “typical” children to know how to interact with us. They may feel uncomfortable or sad for us. I would like parents to know, Aaron is a normal kid with kid interests. Talk to him and expect the same from him as you would others; Aaron is unique in that God has chosen him to be a leader and to show God’s love. He smiles, laughs, and hugs through everything. Embrace him for him and do not pity us.”
How Aaron has impacted the family: “My family, like most, has its ups and downs with parenting a child with special needs. I think it is an added stress when it is a child that has many medical appointments, needs, and surgeries at times. It is easy to get dragged down by the fear, anxiety, and stress. However, it has brought us closer and thankful for the healthy times we have with Aaron. Aaron is so positive and happy all the time. He spreads joy to every one he meets. He sees the positive in everything and never complains about all of the hospital visits. He has inspired me to be better and more thankful for what I have. It’s hard to stay sad for long when he is such a warrior. He has helped me to appreciate life so much more, rely on God, and advocate for people with disability to be the best they can be.”
Aaron is entering the 6th grade this year, and Krista has had amazing luck with the district he is part of. Until now. The district is trying to take services away from him, and prevent him from accessing the general education curriculum. Krista is looking for a new district for him. His MRI is scheduled in two weeks, and a plan will be put in place to address his symptoms. One last quote from Krista, because so many of us need to hear it, “I think it’s easy to feel alone in this journey, to become overwhelmed and feel helpless. We are all on this journey together, we have each other and [our community] really support, understand and love each other.” She hit the nail on the head: Stronger Together.