Kimberly + Georgia: Life with Trisomy 18
Not only is this post super important for so many moms to read, but today is the perfect day to put it out into the world.
I found Georgia’s pictures on Instagram and knew I had to know more about her family. I talked with her mom, Kimberly, and she quickly responded saying that she would do an interview with me. She sent back her answers quickly and when I read the responses I was in tears. I could feel her love and support for Georgia and I was so excited to have a small part in sharing her story.
I told her I was thinking about trying to get the post up sometime within the next week. Keep in mind, all of this was happening on March 13. When I said that, she informed me that March 18 was a very important day for her family. You see, Georgia has a condition called Trisomy 18, and March 18th is Trisomy 18 Awareness Day. So needless to say, this post HAD to go up today. We need to share Kimberly and Georgia’s story and spread some information on this condition!
Please remember this post is intended to bring awareness to Trisomy 18 and bring support to Kimberly and Geogia’s family. There is no hate or judgement on this blog! Now, let’s get into the post!
Kimberly + Georgia
1. Tell us about yourself!
My name is Kimberly Minor. I am originally from NY but have lived in Georgia for over 20 years. We now call Newnan home. My hobbies include blogging, photography, and volunteering. I am a stay-at-home mom and am also the Southeast Coordinator for the 18th Chromosome Registry & Research Society. I am also part of the Trisomy Awareness Month board of SOFT, a charity organization that provides support to families of rare trisomies. I run two blogs, More Than 10 Percent, in which mothers of rare trisomy children can share their stories, and A Minor Bump In the Road, which is more focus on my personal story. I also manage my daughter's advocacy pages on IG & FB.
2. Tell us about your family.
I am married to an amazing man named Patrick. We met as restaurant managers and it was love at first sight. Together we just have Georgia, our two year old daughter. My husband has 3 boys from 2 previous relationships; the twins, Nolan & Gavin, are 15, and Riley is 13. We love taking time as a family to explore Atlanta, our nearest big city, and going to our own local parks.
3. Tell us about Georgia.
Georgia is... strong-willed & stubborn. Her therapists often talk about her sassiness. She has a lot of opinions for a non-verbal two year old, and she finds her own ways to get those out. She has a great sense of humor and enjoys making others laugh. She loves to watch Mickey Mouse Clubhouse and Moana. She loves music and often "plays along" to the beat. She spends a lot of time at therapies, and her favorite is aquatic therapy at our YMCA in which my husband gets to participate. We have two large pitbull rescues that she enjoys hanging out with, and one of her only words is "dog." She is a daddy's girl, and lights up the second he is home..
4. When and how was Georgia diagnosed?
My daughter was a month old when we received her diagnosis.
Throughout my pregnancy I insisted something was wrong but doctors assured me that there was nothing to worry about... she was supposed to be totally healthy.
Things started to go wrong shortly after my water broke. Melconium was found in my amniotic fluid and I wasn't dilating. After a few rounds of pitocin, Georgia's heart rste drastically dropped and I was rushed to the OR. Via emergency c-section, she entered this world at only 4 lbs 5 ounces and was not breathing. They resuscitated her by blow by oxygen and realized quickly something was wrong. They discovered 3 heart defects and a severe amount of white matter in her brain. She had a facial palsy and the placenta fell apart upon removal. The umbilical cord was pencil thin, and they diagnosed her with IUGR. She failed her car seat 3 times, later diagnosed with obstructive apnea. We asked for genetic testing which was completed our tenth and final day inpatient.
A few weeks later, a letter came from the Department of Health talking our our child's disability. They claimed our pediatrician referred us. I was so confused and repeatedly left messages with the office. At 4:30pm on a Friday a receptionist called back and said our daughter tested positive for Trisomy 18. When I asked what it was, she instructed me to Google it. It was devastating. 90 percent of newborns die by age 1.
5. What were your initial thoughts and questions after her diagnosis?
My initial response was hysteria. Then I questioned it's validity. The was we found out... no answers were provided. Google said she shouldn't be alive, yet here she was. I then scoured the internet for any hope and information and I found this secret world of kids thriving.
6. What are some obstacles Georgia faces?
Oh gosh... there's so many facets to her condition. Trisomy 18 essentially causes her body to not follow the normal rules. Her three heart defects have been blessfully managed thus far, and one has healed on it's own. The white matter in her brain disappeared. Her brain physically is perfectly formed from all indications so far. Neurologically, she is delayed in speech and phsycial capacity, but not socially. Her greatest frustrations is her inability to communicate effectively and her mixed muscle tone. She is nonverbal and nonmobile. Her obstructive apnea is only problematic when she is sick or has reflux. Essentially any small irritation in her airways can cause her to obstruct and drastically lower her oxygen levels. Her sight is impacted so she wears glasses and her facial palsy, while it has improved, causes some difficulty with eating. We are currently in physical, speech, occupational, feeding, aquatic, vision, and play therapies. She also just finished a 3 week stint of intensive Neurosuit therapy.
7. How does this affect your daily life?
I had to leave my job. I couldn't come back full time, so they fired me, forcing us to be a one income household. I've tried to work other jobs but they always seem impossible to manage along with Georgia's needs. We attend therapy almost every day, and most are located over an hour away. Insurance only partially covers our therapies, so that, coupled with cutting our income in half, has caused a huge financial strain.
But all of it has been worth it. Our daily lives are so much more full with Georgia in them. She brought my husband and I closer to God and closer to each other. Nothing will test you more, but you come out stronger from the fire. She is so incredibly full of life. We spend every day with a living breathing miracle, and that certainly helps you gain perspective. She inspires us daily and teaches us a new way of appreciating life.
8. What do you wish other people knew about Georgia?
I wish they could spend one day with us and see just how much joy is in it. I wish they could feel the happiness inside me when Georgia smiles, or the pride when she successfully finishes eating a yogurt. When she hits these tiny inchstones they carry into bigger milestones, and the happiness brought into this world is indescribable. I wish they could hear her sing her favorite songs or see the way she "pets" people she loves. I wish they could laugh at the way she tells her therapists "no" and "all done" without saying a word. Waking up to her chatter from her crib or rocking her to sleep is the greatest blessing that no one else gets to feel. I wish they could feel her potential and understand her value.
9. How could friends and family be more supportive?
I wish we had help with child care. I miss working or just being able to get my nails done without feeling guilty. I wish they would even just come over and sit with us some days or run errands with us... because we just don't get much social interaction anymore.
10. What do YOU need? (Mamas are so often forgotten about so it is important to ask this question.)
Everyone always asks this but really I never know how to answer. I wish we were financially more stable so life would feel more like life. I wish I could just go on vacation with my husband and not feel insane guilt. I wish we could take Georgia and her brothers to do more or enjoy more... but we just can't afford to. I also wish I didn't always feel so guilty about *everything* lol. I feel guilty right now that I am taking time to fill this out instead of playing with Georgia.
11. Closing thoughts, or just anything else you would like to add?
I do want to brag on how amazing my daughter is! She is two and kicking T18's butt. She knows 6 words now and uses sign language somewhat consistantly. She has only been hospitalized once overnight and eats entirely orally. She currently is on no oxygen and no medications! She can stand assisted and sit assisted. AND she is TWO. She was supposed to be dead, remember?!
Also if you are a new parent facing a scary diagnosis of T18 or something similar REACH OUT TO ME. I can help!
12. How can people reach out to you?
IG & Facebook @fiercegeorgiaonmymind
Again, Kimberly, thank you so much for allowing me to interview you. I loved hearing yours and Georgia’s story, and I can just feel the love you have for her through your answers. She seems like such a light and I know God has big plans with her life.
If you would like to be interviewed please send an email to firstname.lastname@example.org or reach out to me on my Instagram which is lilylburton. I want my blog to be a platform for moms of all walks of life so we can all learn and grow with one another.