Overjoyed by their first pregnancy, newlyweds from North Carolina hadn’t made it very far into their pregnancy when they learned their unborn baby son had a severe genetic disorder and a form of dwarfism affecting roughly one in 100,000. Led by faith, the couple refused an abortion, embracing whatever the future may hold.
Native Floridian Hannah Peters, 30, has been married to native Californian Sullivan Peters, 30, for 11 years, and both have a “strong foundation of faith.” They made their home in Charlotte, North Carolina, and their miracle son, Jude, turned 9 years old on April 17.
“This was our miracle given to us,” Hannah told The Epoch Times, adding that they knew God was looking after their baby son and that “He would write his story.”
“We placed everything in His hands for we knew He had a perfect plan,” she said.
Jude, who is dependent upon his parents full time, was born with a rare condition called rhizomelic chondrodysplasia punctata (RCDP) which is characterized by skeletal abnormalities, severe intellectual disability, congenital cataracts, profound growth deficiency, and even recurring respiratory illnesses.
“Any child living until the age of five is considered a long-term survivor,” Hannah said. “Jude is a miracle! They sent him home on hospice and morphine and told us he would maybe live for two weeks. ... His life is not only a gift to us but to so many people.
Choosing Life
Hannah, a stay-at-home mom, and Sullivan, who works for Jude’s medical supply company, met at 17 through a mutual friend and “instantly clicked.” Sullivan proposed at the same live music venue where they met, and the couple tied the knot in May 2012 on a beautiful horse farm in Waxhaw, North Carolina.To their great surprise, they found out they were expecting Jude a year later.
“We were so excited and anxious to become parents,” Hannah said. “We didn’t make it very far into our pregnancy before we found out that Jude had some medical concerns.”
At Hannah’s second prenatal appointment, a blood test showed that she was a carrier of cystic fibrosis. During her second 4D ultrasound, doctors confirmed that the baby had a severe form of skeletal dysplasia. Next came the biggest shock of all.
Total Faith
Hannah had regular scans, each one both exciting and nerve-wracking. The faithful couple, who both grew up in Christian homes, continued to place their unborn baby in the hands of God; their baby was their miracle and they trusted in God’s “perfect plan.”Hannah said: “I think that the unknowns were the scariest part. They didn’t know exactly what he had, and just kept telling us they knew it was ’very severe.' ... They even told us they didn’t know if he would be compatible with life outside the womb, but we continued to pray and believe for miracles. We still created a nursery for Jude, bought his car seat, and packed our hospital bags in total faith and believing. We never let go of hope!”
When Hannah suffered a partial placental abruption at 32 weeks, during her baby shower, she was rushed to the hospital and prepared for an emergency C-section. But since baby Jude was still so tiny, doctors administered medication to prevent infection and steroids to help the baby’s lungs develop, in hopes of delaying delivery for another 24 to 48 hours.
“The doctors on our high-risk antepartum team told us it would be a ’medical case study,' because my amniotic fluid replenished, and I was able to stay on bed rest and carry to 40 weeks,” Hannah said, insisting, “This entire journey since the very beginning has been a miracle.”
Jude was born on April 17, 2014, in Charlotte, North Carolina, at CMC Main, now Atrium Health Carolinas Medical Center. Hannah remembers it as the best day of their lives and knew from the outset that Jude was a fighter.
“They told us they didn’t think Jude would be able to breathe on his own, and therefore we wouldn’t hear him cry,” she said.
Will to Live
The couple received Jude’s official diagnosis through blood testing when he was a few weeks old at Nemours Children’s Hospital in Wilmington, Delaware. Around the same time, they were invited to become part of a clinical trial in conjunction with Med-Life Discoveries, Nemours Children’s Hospital, and RhizoKids, developing a plasmalogen therapy for RCDP.“We are currently in the natural history portion of this trial, and getting closer every day to starting this new treatment. ... It’s hard to put into words what this means to me,” Hannah said.
Life for the family of three today is centered around Jude’s care. Jude, who is “100 percent oxygen dependent at all times,” requires daily breathing treatments and vest therapy to keep his lungs clear, gets all of his nutrition through a feeding tube, needs help bathing and changing, and has therapy to prevent his joints and muscles from stiffening.
Two of Jude’s biggest challenges, Hannah said, are seizures and lung issues; he has spent over a month in the ICU for something as simple as a common cold. Yet, Jude’s family is constantly blown away by his will to live.
Hannah said: “Jude is often referred to as Brave Little Warrior because of his strength and true bravery. We have seen him endure many medical procedures, catheters, spinal taps, and IVs and he never cries for them. He will squeeze our hands and breathes deeply through the pain with his worship music playing.
“Jude responds so much to worship music. We play worship music at home for him all day, and it sets such a peaceful and happy environment for him. You often hear his little voice trying to sing along, and he’ll give huge smiles when his favorite songs come on.”
Jude’s Purpose
Bubbly Jude loves meeting new people; is a huge fan of cuddles, loud noises, and dancing; and is a “major night owl” who likes to stay up late and sleep in late. Loving and being loved by his family is Jude’s favorite thing of all.“Jude has the sweetest spirit, and though he is nonverbal, he has learned to express to us in his own beautiful and special ways just how much he loves us,” Hannah said. “Being Jude’s mom is the greatest honor of my life, and being loved by him is the most wonderful gift.”
