When Kim Goodman walked into CURE Uganda and first glimpsed the mothers waiting in the ward, her heart broke a little. She saw weary moms from all parts of the country and beyond, many who rode for days on hot buses that careened along bumpy, dusty, unpaved roads with infants in arms—infants suffering from hydrocephalus. Kim was prepared to see the physical effects of hydrocephalus on a tiny baby; what threw her was the way the mothers turned away when she entered, covering and hiding their infants from view. They were scared and ashamed, and Kim, a visitor from first-world U.S.A., knew exactly how they felt.
Kim Goodman’s fifth pregnancy came as a surprise. She and her husband, Blake, already had four children (all boys) and were in the middle of a period of transition.
“I wasn’t in the best health,” Kim says. “My youngest was having some health issues. We were building a house. Logistically, emotionally, and financially, it wasn’t the best time to be pregnant.” Yet pregnant she was, and determined to love and bring her fifth child into the world safely.
Her pregnancy progressed, and soon it came time for the routine 20-week ultrasound to check her baby’s anatomy. Kim’s prerequisite genetic testing had already come back normal, and the parents knew the baby was a girl. As she administered the exam, the ultrasound technician suddenly became quiet, and the couple knew something was wrong. The tech left to confer with the doctor, leaving the scared parents alone with their thoughts. “It felt like hours until she returned,” says Kim. “Those were the longest moments of my life.”
The tech returned with the doctor, who explained that their daughter had congenital aqueductal stenosis, which had caused severe hydrocephalus. The pressure from the excess fluid had affected the cerebellum. Brain structures, the doctor explained, were already being hindered. The doctor, she remembered, was very grave, and so were the genetic counselors who arrived to present Kim and Blake with their options. The expectant parents, they said, only had so many weeks to terminate the pregnancy. They went on to explain that most parents would end the pregnancy based upon the information they had just received.
The couple was stunned. But Blake and Kim never considered abortion. It didn’t matter how bleak their baby’s prognosis might be; that word wasn’t a part of their vocabulary.
Improbably, the couple already had firsthand knowledge of hydrocephalus. Close friends of theirs had a son with the condition. Blake and Kim immediately reached out to them for guidance. “Call Dr. Warf at Boston Children’s hospital,” their friends said.
Dr. Benjamin Warf is a neurosurgeon and the doctor who conceived the innovative ETV/CPC treatment for hydrocephalus. Endoscopic third ventriculostomy with choroid plexus cauterization (ETV/CPC) is a minimally invasive, low-cost alternative to shunt placement that Dr. Warf developed during his tenure as medical director and founding chief of surgery at CURE Uganda. Today, Dr. Warf serves as the director of neonatal and congenital anomaly neurosurgery at Boston Children’s Hospital.
Kim immediately sent Dr. Warf an email and was surprised to hear right back from the busy surgeon. Dr. Warf told her to come to Boston for a fetal MRI. She went, and the MRI not only detailed the extent of the swelling in her daughter’s head but also showed a rare neurological disorder. Their baby’s cerebellum was small, fused, and lacked a vermis, a part of the cerebellum that helps to regulate muscle tone.
The MRI did not provide a definitive diagnosis. It was possible, Dr. Warf admitted, that their child would never walk or talk. But, he acknowledged, they really couldn’t know for sure.
Kim’s experience in Boston was vastly different from what she had encountered before. Instead of counseling that indicated that abortion was Kim’s best option, Dr. Warf viewed her growing daughter as a precious life full of potential and promise.
“I can fix the hydrocephalus,” he said. “Once you address the fluid situation, anything is possible.”
The plan was to have the baby in Boston so she could immediately undergo the ETV/CPC surgery, but Kim went into labor early. Baby Marion was born in Atlanta and quickly flown to Boston, where she remained in NICU until her surgery. Kim flew to Atlanta a couple of days later, after recovering from childbirth.
Kim’s reunion with her daughter wasn’t what she anticipated.
“It was a shock to see her,” she says. “She was this little baby with a severe, soft, huge head. She had no neck strength and was so awkward to hold. It was frightening. I was not prepared to hold my baby.”
In the weeks after baby Marion’s birth, Kim’s emotions ran the gamut. She struggled with feelings of grief and shame. Some people seemed to blame her for her daughter’s condition. “They thought I already had too many children. They insinuated that I didn’t take good enough care of myself, and that was why Marion was born the way she was.”
Kim was exhausted, in shock, and undergoing the hormonal roller coaster that accompanied childbirth. She spiraled into a deep postpartum depression.
“I thought my faith was strong. I thought I trusted God. But all of a sudden, I felt stripped of everything. It was hard to hold Marion, to care for her, to feed her. My eyes would well up with tears when people told me they thought my daughter was beautiful, because she looked scary to me.”
Dr. Warf made it clear that Marion’s condition was no one’s fault. “There’s nothing that you could have done,” he insisted. But it would take Kim time to acknowledge those words as true.
Kim and Marion stayed in Boston for a month. Marion underwent the ETV/CPC procedure. Six weeks later, however, her head began to swell again. Dr. Warf determined that the procedure alone wasn’t doing enough to relieve the fluid and implanted a shunt to divert it. Remarkably, Marion hasn’t had one issue since its insertion.
Back in Georgia, baby Marion defied the odds and thrived in her home environment. She received physical and occupational therapy regularly and, Kim brags, astounded every specialist with whom they worked.
Life went on. Kim became the mother Marion needed her to be. She still struggled with sadness over the life her daughter wouldn’t have but persevered through those feelings, seeking counseling and leaning on God for support. The best therapy of all ended up being one she never expected: a journey to CURE Uganda to meet the mothers living through the same struggles she had.
Kim and Blake were introduced to CURE Uganda by Blake’s best friend, whose son had also been born with hydrocephalus. Two years ago, he invited the Goodmans to CURE’s annual President’s Weekend. Before attending the event, the Goodmans knew very little about the organization. While there, they heard many testimonies from CURE employees, ambassadors, and patients, and they were blown away by what CURE was accomplishing.
“When they read aloud the mission of CURE—to heal the sick and proclaim the kingdom of God—I got goosebumps,” says Kim.
They enjoyed the weekend so much that they went again the next year. While there, Kim felt called to speak with someone about visiting the mothers in CURE Uganda. She approached Dr. Warf and Derek Johnson, CURE’s senior director of development, and told them she wanted to go to Uganda. Derek was on board, sharing that support for the mothers in the hospital was something they could use more of. Dr. Warf was planning a visit to the hospital within the next year, and he invited Kim to come along and meet the mothers of CURE Uganda.
“I know how they feel, and I would be honored to go,” said Kim.
Nine months later, Kim boarded a plane to Uganda. At the hospital, she spent her days amongst the caretakers, infants, and children in the ward, offering support wherever she could.
In developing countries like Uganda, families struggle with the stigma that surrounds a condition like hydrocephalus. Communities often view defects as a curse. Entire families are shunned. Husbands sometimes blame their wives and abandon both mother and child. Mothers struggle with feelings of both intense love for their newborn and horrific shame for their child’s defect. It was the shame that caused them to cover their children when Kim walked into the ward.
Kim understood their conflicting feelings, and her empathy made a difference during her stay at CURE Uganda. While there, she showed the mothers how to hold their tiny babies, whose heads were soft, swollen, and fragile. She taught them how to regularly change their babies’ sleep positions to avoid flat head syndrome. She also shared tricks she’d learn to best feed Marion since low muscle tone and poor coordination can impede the process. She even got to scrub in and witness the same surgery that saved her daughter’s life.
Kim felt drawn to one mom in particular. Jacqueline’s son, Joshua, had hydrocephalus associated with spina bifida. Initially, Jacqueline seemed shy and stand-offish, but she kept sharing glances with Kim across the ward. On a quiet afternoon, Kim went over and introduced herself. The two became good friends. Jacqueline opened up, sharing that her husband was having a hard time accepting their son’s condition. Kim prayed and talked with Jacqueline, and she sat with Jacqueline when Joshua went in and came out of surgery. The two still email back and forth to this day.
Kim remains in awe of the atmosphere cultivated at CURE Uganda. “Hospitals are usually scary and lonely places. But in Uganda … you have to understand that there are 50 different dialects spoken across the country. Most of these moms can’t understand one another. But the way these women worshipped and sang and danced! The mind, body, and spirit connection at CURE Uganda is so healing for them.”
It was healing for Kim, too. The similarities between her and the mothers at CURE Uganda overshadowed the differences. Many of the moms in the ward felt judged by people they knew; so had Kim. Some of the moms felt afraid handing their babies’ lives over to a surgeon; Kim had felt that fear, too. All of the moms at CURE Uganda would have done anything to help their baby, even travel long distances to a strange place to gain the help needed. Kim had done the same. Kim and the mothers in the ward found a common language through the eternal, healing love of Jesus Christ, a language of love that permeates the culture of CURE Uganda.
Marion, now three, continues to thrive. She attends an inclusive preschool two days a week and is about to start swim lessons. She loves music and dance parties in the kitchen, where she waves her arms in the air to the beat. (Her favorite song is “Dancing Queen” by Abba.)
Marion has four older brothers who dote on her. “They have empathy and an awareness of others who are different than they are,” says Kim. “I’m often complimented about how kind they are. You can’t teach that. It’s something they can take with them forever.
“Things are starting to click for Marion physically,” says continues. “She can scoot herself across the floor and crawl and pull herself up. She’s very verbal, an extrovert to the tenth power! She does require a lot of facilitation. She can play independently on the floor, but she needs to be watched, or she’ll topple over. Cognitively, she’s doing well! Physically is where we see the most delays.”
Last week, Marion took her first steps. To the parents told that she might never walk, each step taken is nothing short of a miracle.
Kim is frank about her postpartum recovery efforts. “It’s been soul-searching work, reconciling myself to the daughter God gave me,” she says. “I went from not understanding to being angry to feeling [sorry] for myself to feeling sorry for her … I just had to work through the emotions. I learned to rely on God for hope and peace and sanity,” she admits. “But at the end of the day, I’m so grateful that I got to have a ‘special needs’ daughter. Before I had Marion, special-needs kids weren’t on my radar. And she IS special. Children who go through medical traumas are fighters, and she’s a fighter.”
Kim remains committed to CURE and its mission to heal the sick and proclaim the kingdom of God.
“I have a heart for these babies that CURE touches and heals. It’s so incredible what this organization is doing. People don’t understand the healing power of Jesus, but I saw surgeons be the healing hands of God. I watched families find spiritual healing.”
As Marion’s story continues to unfold, Kim no longer feels ashamed. Rather, she wants to share her daughter with the world. She wants people to know about the little girl who was never supposed to walk or talk. She wants people to behold the lively girl whose life, doctors once implied, would never amount to much. “I want to shout God’s miracles from the rooftops,” says Kim, referring not only to Marion but to the wonders witnessed at CURE Uganda, wonders that are testaments to the healing and redemptive powers only found in Jesus Christ.