Team Nia's Journey

Nia’s Journey is one of a precious non-preemie miracle with a rare genetic condition...

Nia Means PURPOSE!!!

At 20 weeks and 5 days gestation, our world was completing turned upside down. On June 1, 2017 my husband and I had our first appointment with a maternal fetal medicine (MFM) specialist because our baby was a measuring a couple of weeks behind. He uttered the words, your baby has a condition not compatible with life. Simply put, your baby will die! He said it would be a tragic birth as our baby would essentially suffocate upon delivery. Her chest was too small!  Our sweet Nia was initially diagnosed with short rib polydactyl syndrome (SRSP), which is a rare lethal form of dwarfism that constricts the rib cage and chest cavity size. We had two medical experts’ opinions and both recommended termination. Through prayer and divine intervention we decided against this opinion and so happy we did!

We completed in-depth genetic testing and learned my husband is a known carrier of a rare autosomal recessive form of dwarfism, Ellis-van Creveld Syndrome (EVC) and I have an unknown mutation on the same gene.  Together that gives us a 1 in 4 chance of having babies with this condition. EVC has similar characteristics of SRSP. However, EVC is not 100 percent lethal, but still has a high mortality rate due to congenital heart defects (CHD) and lung complications primarily because of a smaller rib cage. EVC is highly concentrated in the Amish/Dutch Population and there are less than 300 cases reported worldwide. Nia is one of three African descent babies that we are aware of that has EVC.

At 29 weeks gestation, we learned Nia had a CHD, specifically atria septal defect (a hole in her heart) and a leaky valve, which furthered diminished her chances of survival. We prayed yet prepared for Nia’s funeral.

On September 27, 2017 at 37 weeks and 4 days, Nia Alexandria made her debut via C-Section because I had no amniotic fluid. She screamed to the top of her little lungs, shocking the entire operating room!!! There were real tears by many in the room! She did not require intubation, only CPAP! Wow! 

However, on November 27, 2017 at exactly 2 months of age, Nia stopped breathing twice in one day with no apparent cause. She turned blue. We thought our baby had died. A week later, we elected to transfer Nia to Nemours/duPont Children’s Hospital in Wilmington, DE to receive expert care for her rare condition. Nia graduated from duPont’s NICU on January 24, 2018 as a #EVCWarrior #NICUWarrior and #CHDWarrior. Nia underwent Open Heart Surgery on April 16, 2019, and subsequently became a member of the #ZipperClub. She is not only surviving but thriving today!  

Team Nia’s Journey stands with March of Dimes because this organization not only advocates for preemie miracles but for all babies including those with rare genetic conditions like Nia. No mother should have to endure the pregnancy journey I did. Our journey has touched people locally and globally. We share our story to raise awareness for rare genetic disorders and complex medical needs babies.

We are on a mission with March of Dimes to transform advocacy for quality healthcare and positive outcomes for moms and babies to build a greater future for all families. We pride ourselves on engaging with healthcare providers and helping to provide resources and educational programs to support moms (and dads) on giving babies a healthy beginning. We need you on our team to continue fighting for the most immense and rare health challenges facing moms and babies. Please march with us or be a blessing to this cause! Together we can make IMPACT and a difference for the tiniest miracles!

Blessings,

Team Nia’s Journey!

Follow our story at www.niasjourney.com

Instagram @ nias_journey