Child Spotlight: Kaimee Paige (Septo-Optic Dysplasia)

Child Spotlight: Kaimee Paige

1. What is the name of your child’s diagnosis?

Kaimee (pronounced Kay-mee) is diagnosed with Septo-Optic Dysplasia. Septo-Optic Dysplasia is a sporadic disorder that occurs in every 1 in 10, 000 newborns. There is no known indication as to why it occurs, but is found more commonly in babies that come from younger mothers (age ranging from 16 – 23). I was 2 weeks from being 23 when I had Kaimee. I was told every worst case scenario of what can come with Septo-Optic Dysplasia such as immobility, learning disabilities, legally blind, behavioural issues, autism, developmental delay, hormone deficiencies, seizures, anosmia, sensorineural hearing loss and cardiac anomalies, however, Kaimee, so far, is only showing to have visual impairment and hormonal deficiencies (this can still change through her lifetime).

2. Tell us a bit about how this affects your child

Septo-Optic Dysplasia can come in so many different varieties and forms, but in order to be diagnosed with it, the child must have 2 of the three things: absent septum pellucidum, optic nerve hypoplasia and/or pituitary hypoplasia. In Kaimee’s case, she has all three. I knew at 30 weeks pregnant that there was a good chance of my child having Septo-Optic Dysplasia as they could indicate the septum pellucidum being absent through an MRI. Septo-Optic Dysplasia affects Kaimee by causing her to have an extremely weak optic nerve resulting in nystagmus in both her eyes, esotropia (crossed-eyes) and weak vision (most children are blind, so Kaimee is so lucky to have the vision she has). She has had 2 strabismus repair surgeries on her eyes and will be getting another surgery at the end of March to try and correct her eye alignment. She has some lovely little glasses and has had them since she was 17 months old. This has caused her gross motor skills and fine motor skills to be underdeveloped as she should be reaching certain milestones at their “age marker”, however, a little after her second birthday, she started to walk confidently. In addition, she did have hypotonia as an infant, but early intervention exercises helped her to succeed (the hypotonia is related to the absent septum pellucidum). Lastly, Kaimee has pituitary hypoplasia, in her case, meaning she is missing half of her pituitary gland. This results in hormone replacement as Kaimee can not produce or produce very little amounts of vital hormones. Kaimee is also diagnosed with Diabetes Insipidus as she can not produce ADH hormone naturally. This means, without medication, she is EXTREMELY dehydrated and it becomes life threatening (very different then diabetes mellitus). She also gets growth hormone injections 6 days a week , starting at the age of 18 months, as Kaimee can not produce this hormone on her own. Without growth hormone, Kaimee can not survive. Kaimee is on additional hormones that help her body regulate her other hormones and help them function properly, but these are her two main ones. Kaimee gets daily doses of her meds, some of them twice a day. The lack of certain hormones affects her in a way where it is crucial for her to survive.

3. What have you learned from your child and being his/her parent?

Kaimee has taught me more then I think I will ever be able to teach her in a lifetime. She has taught me so many medical terms I didn’t even know existed, she has taught me patience beyond measure with all the extra tasks, doctors’ appointments, blood work, tests, etc., but most importantly has taught me how much love I could actually have for someone. I look at her and think that there is no one stronger for all that she has been through in such a short lifetime. It was a hard 2 years, but after her 2nd birthday, I feel like we finally got everything figured out such as medication doses, capabilities, etc. which are always changing. She is almost 3 now and is surprising the doctors every time they see her which is so heartwarming as her mother especially being told to terminate my pregnancy at 30 weeks. Alot of people have a hard time understanding that Kaimee has special needs as she may not “look” like there is much “different” (I hate using the words in quotations because all the little ones are so special in their own way, but I don’t know how else to get my idea across) on the outside, but internally, it’s a whole new world for her. Other than her shaky eyes and glasses, many wouldn’t think that we are so lucky to have her with us every day, but we definitely cherish her LITERALLY every single day. Without her medication and the hard work of her Endocrinologist, we wouldn’t have her here as her hormone replacements are essential for her life. Just because someone may not appear that they have anything wrong, doesn’t mean that that is always the case. She has also taught me to be strong and to be the best advocate for her. Lastly, she has taught me that I should forever be grateful for having the Stollery Children’s Hospital in our backyard, especially when I had to make those emergency trips at any hour of the day and their staff is amazing and have taught me so much and have got us here, to where we are today. She has pushed me as a single mom, to pursue a career in the medical field, and prior to Kaimee, I would’ve never ever wanted to set foot in a hospital for my future line of work.