Kari + Olivia: Life with Trisomy 9 Mosaic

This interview is a different layout from my previous ones. I had the pleasure of getting to interview Kari about her daughter Olivia, but it ended up being easier for her to tell me her story - and for me to change the perspective and edit it for her.



Kari is such a strong mama and her story is definitely going to give you all the feels. I can’t wait to share it with you!



Please remember this post is intended to bring awareness to Trisomy 9 Mosaic and bring support to Kari and Olivia’s family. There is no hate or judgement on this blog! And this is all coming from their perspective and individual experience with Trisomy 9 Mosaic. So their story will not be the case for everyone. Now, let’s get into the post!

Kari + Olivia

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     Kari and Brad live in Minnesota and both work in mental health: Kari working with children and Brad working with Veterans. They have two children, Olivia-Adair who is 3, and Maverick who is 19 months. Before having Olivia, they tried for over a year to have a baby until their prayers were finally answered.

    At the 20-week ultrasound they discovered they were having a little girl and could not be any more excited. The pregnancy up until this point had seemed perfectly normal, so Kari and Brad were scared when they received a phone call four days later asking them to go see a doctor at Perinatology. The reason was because the doctors had seen something during the ultrasound and “wanted to check it out”.

     At the ultrasound, they had seen some “soft markers”, they couldn’t see Olivia’s left kidney, and she seemed to have a small hole in her heart. After this point, Kari had to attend doctor’s appointments once a week for ultrasounds concerning these soft markers and Olivia’s lack of growth.

     At 33 weeks the doctors offered to do a new blood test called the MaterniT Genome test – which led to a diagnosis of Trisomy 9. The news was terrifying, and it was the first time Kari had ever seen Brad cry. The genetic doctor called and told them that they needed to get to the hospital for an amniocentesis right away because what the blood test was showing was “fatal”.

     When the results finally returned, confirming the Trisomy 9 diagnosis, the genetic doctors explained that they would have no idea what this would look like until Olivia arrived. The amniocentesis was not able to confirm whether her Trisomy was full, partial or mosaic. If it was full, that would mean it would affect all of her cells… and chances were, she would not survive.

     They began meeting with palliative care doctors to put a plan in place in case Olivia was born with full Trisomy 9. You can’t plan for your first baby not surviving. They cried and prayed for weeks and weeks, as it was all they could do.

     After weeks of monitoring, they realized that Olivia had not grown. The doctors planned a cesarean section for Kari once Olivia reached 37 weeks gestation – that way they could “just get her here and see how she does.”

     Olivia was brought into this world via c-section on December 21, 2015. She was 15 inches long and weighed 3 lbs. and 9 oz. The doctors were absolutely amazed: there were no visual deformities of her limbs, the echocardiogram of her heart showed only one small hole, and she was able to come off breathing support after 48 hours. Due to her size and inability to feed, she stayed in the NICU for the first month of her life. And when she was finally discharged, they sent her home with only a handheld monitor to watch her breathing. Let it be noted this was by their request.

     Olivia was born in a non-children’s hospital, and two days into their trip home they found out they needed more support. Olivia would choke and turn blue when they laid her tiny 4 lb. body down for diaper changes. Kari knew from her mommy instincts, that something wasn’t right. She just felt it in her gut.

     They went back to the hospital and chose to be transported to a children’s hospital which was an hour away. Olivia stayed there for over two months. With appropriate testing, they found out she was aspirating when she nursed, and she needed surgery in her airway. She eventually needed a G-Tube placed to help her feed.

     At 3.5 months, Olivia returned home with an apnea monitor, pulse oximeter, oxygen she wore full time and a feeding tube. Needless to say, Kari and Bryan were overwhelmed. They would stay awake and watch her sleep since her alarm went off all the time. They were terrified she was going to die.

     The hospital had consistently told them that Olivia would not qualify for nursing care since she did not have a trach or a ventilator. They knew they couldn’t go through this alone, so Kari started to call nursing agencies herself. And finally, one agency came to assess Olivia and told them she could get 16 hours a day or nursing care. Which was a huge blessing to their family.

     They believe this saved their daughter’s life – and their sanity. It also allowed for Olivia to stay home and not be in the hospital constantly.

     But this did not solve questions that Kari had bouncing around in her mind: Should she go back to work? What does life look like now? They had a mortgage, car payments, bills, student loans… they didn’t get to stop being adults because they had been given a daughter with special needs.

     Financially, they have had a lot of struggles. Kari was not able to work for the first two years of Olivia’s life, as nursing care was very inconsistent and Olivia could not go to daycare. Now, Kari works part time and runs a home-based business because they have two children and all the same bills as before.

     As Olivia gets stronger and healthier, she is now able to do a lot more things that other children her age do – her disabilities aren’t always as visible. Her life is still different, though, and Kari and Brad worry about a lot of things for Olivia that they don’t with Maverick.

     One thing that Kari hates the most about Trisomy is that just when it seems like Olivia is doing really well – maybe we can take out the tube, or maybe she doesn’t need the monitor when she sleeps anymore – something else seems to pop up. Right now, they are watching her spine and when Kari told me their story they were on their way to the cardiologist because Olivia’s heart rates have suddenly been dropping to 0 when she sleeps.

     Olivia’s condition is so rare that there are only about 200 kids in the entire world that are diagnosed with this. So, doctors don’t have any information to give Kari and Brad. Trisomy also affects people differently, so while among their small Trisomy family they can draw some conclusions, there are no definitive answers for them for how to best treat their children. And the parents are the ones who know their children best, as they play the roles of doctor/nurse/case manager/therapist/parent/etc., so it is only natural for them to try to find answers for their children.

     Even though things started out pretty rough, and Olivia’s parents have a lot of trauma from watching her turn blue, have a seizure, and choke/gag during feedings, today they are in a different place than most days. Olivia walks, runs, jumps, eats all of her food orally, signs, is learning to talk and has a lot of typical three-year-old behaviors.

     Right now, their biggest struggle (besides the random things that pop up) are feedings (due to sensory issues and Olivia being picky), and very routine issues such as speech and everything that is involved with having a threenager! The tough part with behaviors is understanding whether this is her age, a lack of ability to communicate best what she wants, sensory issues or actual behavior struggles.

     Olivia is a very bright child, and works extremely hard to learn new things. Overall, she is doing a ton of things other parents with this diagnosis pray that their child will do one day. She has an amazing soul and brings joy and love to everyone she meets. She loves to dance, do gymnastics, swing, color, write, do arts and crafts, play with her babies and she just loves her little brother!

     Olivia has been one of the biggest blessings to Kari and Brad. She has taught them things about life that they never would have understood otherwise – she has taught them about faith, resilience and unconditional love. Everything Olivia does is amazing and they don’t take anything for granted with her.

     Kari has an Instagram profile where she shares a lot about Olivia - you can find her under her username k_steele8. She is also always available to talk with anyone via email or phone, and is an open book. She wants people to know that no diagnosis is fatal. That miracle babies are so resilient and no doctor ever gets to tell you what your kids will and will not do.

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Kari, thank you so much for sharing your story. Olivia is such a fighter and she is so inspiring!



If you would like to be interviewed please send an email to lily@mamaandbabe.com 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.


Love,

Lily

Lily Burton2 Comments