Boo-boos on her heart . . .
Two-year-old Clara is a chatty, loving little girl. When she wakes up, she snuggles her head into her mom’s shoulder for a “Mama hug.” She gets her silliness from her dad, mom Cristiane tells me with a laugh. Clara loves nature, animals, and reading. She already knows her alphabet and numbers in both English and Portuguese. She also has, as she will tell you, “Boo-boos on her heart.”
When Cristiane was 20 weeks pregnant, she learned that Clara had a congenital heart defect. Clara literally had a hole in her heart. Everything changed. Cristiane continued to search for joy, but worries about her daughter, sadness that her pregnancy wasn’t going as planned, and fear about the future kept clouding her mind.
Clara was born at Nemours Children’s Hospital in Delaware, not far from home. A fighter from the start, she faced her first open-heart surgery just 13 days after birth. Sadly, complications soon followed. Clara developed necrotizing enterocolitis, a serious gut infection that required a second emergency surgery. She spent her first seven weeks in the NICU, surrounded by wires, monitors, and a sea of uncertainty. Cristiane remembers walking the hospital halls, passing all the struggling babies and parents, and praying not just for her own little girl, but for all of them.
Cristiane was encouraged to pump as much as possible so Clara would have breastmilk. At first, she was producing so little it felt disheartening. But before long the hospital freezer was overflowing, and she had to rely on a friend to store her milk. That’s when the hospital staff told her about milk donation and connected her to us (thank you lactation team!).
Talking to God . . .
Cristiane’s early motherhood days were complex in a multitude of ways. In addition to her heart defect, Clara was born with Heterotaxy Syndrome. This rare but complex condition occurs when organs in the chest and abdomen are formed abnormally, in the wrong position, or not at all. As a result of her diagnosis, Clara is especially prone to infections, and the family has to remain cautious about her interactions with the world.
Clara requires medications and regular doctor appointments. For a long time, Cristiane wasn’t sleeping more than an hour at a time. Then postpartum depression sent her down a really dark road. Sometimes, when her daughter was crying, she would say to her husband, “I just have to go.” And she would take off through the neighborhood, running through a haze of tears. At times, she would stand outside in the freezing cold, “talking to God,” she tells me.
“One day, I just thought about giving up. I had so many bad thoughts. Finally, I called a friend and told her, ‘I just want to give up. I don’t want to do this anymore.’”
We made it . . .
Cristiane got help. She received care from a psychologist. Her husband supported her. Her friends answered those calls. And her mother-in-law moved from Georgia to Delaware to help. “There was so much love around us. I couldn’t have done this by myself. I love my family, and I love my daughter. We made it.”
Clara’s first heart surgery was intended to stabilize her until she was strong enough for a more complex procedure to close the hole in her heart.
Her doctors consulted with several of the most advanced children’s hospitals in the country, and it was Boston Children’s Hospital that ultimately agreed to take her case. At just 14 months, Clara underwent her second open-heart surgery—her third procedure overall—a grueling operation that lasted from 6.00AM to 4:00PM. But her journey wasn’t over. Just seven months later, she returned to Boston for a final, extensive open-heart surgery to repair the hole in her heart.
In total, Clara has braved four surgeries—three of them open-heart—each one a testament to her incredible strength. Two weeks later, and this little fighter was ready to go home. Clearly, it’s easy to see why Clara’s family refers to her as their little miracle.
With health, heart, and hope . . .
Cristiane is a woman of faith.
Throughout her daughter’s surgery, she prayed—for healing, for strength, for the chance to bring her girl home. She talked to God, just as she had when fighting the war that raged inside her mind.
She tells me the milk she donated was filled with blessings for every baby who would receive it. “I prayed while I was pumping,” she explains. “I prayed that this milk would help babies grow strong, that it would help keep families together and babies healthy. My heart is filled with gratitude, and that’s how you build a strong, healthy family. I hope this gift inspires others to keep going, to find their own heart of gratitude.”
For parents seeking support . . .
It takes courage to reach out, and you deserve support on your journey.
Parenting—and life—can be challenging, but you don’t have to face those challenges alone. If you’re looking for support or guidance, help is available. Below are just a few of the trusted resources you might find helpful. You’ll find more here.
