Norah’s Story

Site created on July 3, 2010

My name is Norah Ann Johnson. I have a rare heart defect called left ventricular non compaction cardiomyopathy.  I lived my first 6months of life in the hospital. I was a baby when I was first listed for a transplant, but my heart got stronger and I was able to go 8 years without needing a new heart.   I am currently 8 years old and listed as a 1B for a heart transplant.   I've had 8 years of many ups and downs with my heart, and  I am waiting patiently at home with my family, mom, dad, Nolan and Waylon.  I am connected to IV medicine 24/7 besides the 5 minutes when mom changes my iv bag and batteries in the morning.  I love my 5 minutes of being cord free  to floss and do cartwheels and get dressed without wiring cords and pumps through my arm holes of shirts:)  We pray every day for the perfect heart to come and for the donor family who will be giving us the most selfless gift.   Thank you for sending me all your love, I feel it everyday!



Background of Norah when she was a baby~
Norah was diagnosed in utero with a heart condition called "Ebsteins Anomolly" at 27 weeks.  Two weeks later (July 1) was our first follow up appointment.  The doctor immediately noticed fluid built up in her body and sent us directly to Children's Hospital in Minneapolis.  We were met by a team of paranatal and cardiology specialists led by Dr. Wagoner.  Tests were run and options were discussed.  Based on the poor test results and the fast progression with the complications a decision was made by the doctors to perform an emergency c section.  Norah Ann Johnson was born at 4:03 pm July 1.  She weighed 4.4 lbs with approximately 2.5lbs being fluid.  Norahs heart is very weak which is making it very difficult for her other organs to function as she needs.  She is too small for any type of surgery and doctors are doing everything possible to help her get stronger on her own.  She is fighting extremely hard.  We are living day by day, as Norah's heart only functions at about 20% due to her noncompaction cardiomyopathy along with the Ebstein's Anomolly.  Transplant was the only option we have left for Norah to live a "normal" life.   We can't express what all of the love and support from our family and friends has meant.  It's truly amazing.  Please continue to hope and pray for our little girl.

Lots of Love,
Andy, Leah, Nolan, Waylon and Norah 

Newest Update

Journal entry by Leah Johnson

The last of Norah’s results of her heart cath and biopsy from Monday are finally all in! Her pressures are all great and unchanged from the last one.  Biopsy was 0R with no AMR and her antibody panel is negative!!  Her tacrolimus level is low again unfortunately, so that dose increased.  Her wbc is low again (2.7) but her neutrophil count is fine and so it’s likely from meds and bactrim (antibiotic) stopped. We will do labs again in 2 weeks and she is able to be unmasked and in public because of the neutrophil count. They decided to lower one of her immunosuppressants, cellcept, in hopes to increase her immunity a tiny bit so she doesn’t catch everything, but still suppress it enough so her body doesn’t reject her the new heart.  
The best heart cath results we could ask for!  We will never be able to thank her donor family enough for giving her this perfect heart.  It’s amazing that her body is taking it on as it’s own so perfectly.  We are beyond lucky our girl got this second chance at life.  Thank you for all the continued prayers and thoughts! Norahs got HEART! ❤️ It’s a happy 6 months post transplant!!!
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