Van Wyk Family Spina Bifida Journey

We are the Van Wyk Family: Judson, Lena, and our daughters, Lily (age 1.5) and Junia (expected early 2023). After a routine ultrasound in early October, we received the hard news that little Junia has a condition called Spina Bifida.

The Short Version:

Spina Bifida requires surgical closure of the exposed spinal tissue. Remarkably, it is now possible to perform this repair in utero through fetal surgery—halting progressive damage to the spinal cord earlier and potentially leading to greater mobility and decreased need for repeated surgical interventions in infancy/early childhood. At the advice of our medical team at Duke, we are pursuing this surgery at Minnesota Children's Hospital in Minneapolis in mid-November. We will be required to remain there for about a month and are seeking help for the many costs associated with this surgery and the medical care needed after Junia is born.

What is Spina Bifida?

According to the Spina Bifida Resource Network: "Spina Bifida is one of the most common, permanently disabling birth defects in America. It occurs when the neural tube, which forms the spinal cord and vertebral column, does not close completely during the first several weeks after conception. Each year about 1,500 pregnancies are affected by Spina Bifida in the US.

"Living with Spina Bifida is different for every person. The spectrum of disability ranges from mild to severe. People with spina bifida often need many surgeries over their lifetime and have lifelong disabilities, including paralysis in the lower parts of the body, mobility challenges, and loss of bladder and bowel control.

"Most children with spina bifida can and do live long productive lives, thanks to advanced medical techniques and support systems."

(Learn more at https://www.spinabifidaassociation.org/)

Our Journey

We know God has been preparing us for this for a very long time, as we actually met while living in a community in Durham, NC for folks with and without intellectual, developmental, and physical disabilities. There, we found lifelong friends worthy of love and respect and saw how much those experiencing disability have to give our community. We know that this diagnosis is only one part of Junia's story, and that she is a beloved child of God who will bring great joy and giftedness into our family and world.

Per the advice of our medical team at Duke University, we are pursuing fetal surgery for Junia at Midwest Fetal Care Center at Minnesota Children's Hospital in Minneapolis. As mentioned above, performing the repair of the spinal defect in utero halts progressive damage to the spinal cord earlier than the traditional postnatal repair (performed 24-48 hours after birth). This remarkable surgery has the potential to significantly decrease Junia's need for brain and spinal surgeries in early childhood, improve the likelihood of walking and other motor functions, and positively impact cognitive development. We have done a great deal of prayer and research about this surgery, sought advice from the best doctors, theologians, and ethicists we could find, and feel confident that this is the best decision for our daughter.

The surgery is tentatively scheduled for November 15, and will require us to remain in Minneapolis for about a month. Lord willing, we will then be able to return home and deliver Junia at Duke. At that point, the prognosis is uncertain, but a NICU stay and further surgery are likely. We particularly ask for prayer that Lena will not go into preterm labor and can carry Junia until at least 35 weeks.

Our Need

As one would expect, this journey will be expensive. We are planning for costs from the surgery and hospital stay itself, travel to Minneapolis, a possible extended stay at Duke, and the (likely) very involved medical journey to come with our little girl. We are blessed to have great insurance through Judson's college ministry organization (Thank you, Coalition for Christian Outreach and all our financial partners who help support our ministry—we are eternally grateful for you!). However, we are still going to need some help. As we gain more clarity about the specific costs and needs to come, we will post them here.

With tremendous gratitude, we ask our community (friends, family, church community) to come around us with prayer and financial support to help us care for Junia as well as we possibly can. We are humbled by the ways God and our community have held us throughout our lives and ministry, and this has only been more apparent since getting this diagnosis. We are in awe of our loving support network and are so grateful for each of you.

On Junia's Name:

Junia was a leader in the early church and a brave woman who followed Jesus. In Romans 16:7, St. Paul says, "Greet Andronicus and Junia, my fellow Jews who have been in prison with me. They are outstanding among the apostles, and they were in Christ before I was." In one of his homilies on the passage, the church father, John Chrysostom (AD 347–407), Bishop of Constantinople, praised Junia in this way: "Greet Andronicus and Junia . . . who are outstanding among the apostles: To be an apostle is something great! But to be outstanding among the apostles—just think what a wonderful song of praise that is! They were outstanding on the basis of their works and virtuous actions. Indeed, how great the wisdom of this woman must have been that she was even deemed worthy of the title of apostle."

We pray that this little girl will be a shining light of Christ in God's Kingdom and full of enduring grace and faith, like her namesake. We know she will have challenges and even suffering to overcome (as we all do). Still, we trust these powerful words from 2 Corinthians 4:17-18: "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."