“Jordyn Hope was diagnosed with a critical congenital heart defect in utero at 20 weeks – Hypoplastic Left Heart Syndrome (HLHS).
During the 10 week NT scan Jessica’s (Jordyn’s Mom) OBGYN noticed some abnormal fluid behind Jordyn’s neck. At 11 & 12 weeks Joe (Jordyn’s Dad) and Jessica went to a specialist for genetic testing who cleared Jordyn of any known abnormalities. The final exam, the anatomy scan had to wait until their 20 week ultra sound. Before this time, the heart is not developed enough to recognize any heart defects. During the ultrasound scan the specialist noticed something & referred them to get a Fetal Echocardiogram.
During their appointment Joe & Jess’ fear became a reality, baby Jordyn’s left side of her heart was severely underdeveloped, HLHS.
Within 24 hours Jess & Joe were at Lurie Children’s Hospital in Chicago meeting with Jordyn’s team of surgeons, cardiologists, nurses, OB doctors, genetic counselors & the rest of her Heart Heroes!
Jordyn was born on September 20th, 6lbs 11 oz.
She had her first open heart surgery at 4 days old! The Norwood Procedure which converts the right ventricle into the main ventricle pumping blood to both the lungs and the body. A shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs.
Jordy is still in Cardiac ICU & is working hard to go home with her Mom, Dad and Big Sister (Ashlyn!).
Jordy will need two more open heart surgeries, one at 4-6 months, Bi-directional Glenn Operation. With her third, Fontan Operation, between 18-36 months.
Through these surgeries, her team of doctors will be reconstructing and rebuilding a new pathway for her blood to circulate and to allow her to live a healthy and full life.
With this condition there is no cure it is considered palliative care. HLHS is a rare heart defect that only occurs in 1 out of every 4,344 babies born in the United States (per the Center for Disease Control.)” – written by her mom, Jess. November 2019.
* UPDATE January 2020: “Jordyn Hope passed away from sepsis while at the hospital. She had a fever, so we brought her in and unfortuantly, ended up misdiagnosing her so she never got the right care for it. She was gone within 12 hours of the fever. She was the sweetest, most amazing girl, we miss her so much! She is an angel warrior now. <3”