All expecting parents wish to have a healthy baby. But, horror of horrors, what if you were told that your tiny little baby might have a birth defect even before he/she is born? Something similar happened to Joni Reinkemeyer and Chris Skain.
Just like most couples, Reinkemeyer and Skain were planning to have a baby for a long time. So, their happiness knew no bounds when they discovered that Reinkemeyer was pregnant. As the couple went about with the usual pregnancy-associated tests and scans, one such scan changed their lives, forever. During a sonogram visit in the 19th week of pregnancy, they were looking forward to discovering the gender of their baby. They had planned to name him Jackson if it was a boy. And boy it was. However, this happy news was unfortunately short-lived. The ultrasound technician noticed that the baby had fluid in his brain, and (what looked like then) a possible tumor on his back. This was promptly reported to the concerned doctors. After a thorough investigation, it was confirmed that the yet-to-be-born baby had spina bifida.
Spina bifida is a condition where a baby’s spinal cord along with the spine fail to develop properly in the womb, thereby becoming defective (1). This can even cause paralysis for life. The couple was left shocked, upset and terrified. While still coming to terms with this tragic bit of news, they were also worried how their baby’s life will pan out if he survived. However, the doctors at the Barnes Jewish Hospital, St. Louis, Missouri, met the parents. After a prolonged discussion, the doctors provided a solution which was not only shocking but also unbelievably possible! The solution was, hold your breath, to operate on the baby while still in the womb!
Reinkemeyer and Skain were as astonished hearing about this then, as we are now. They were unsure whether they should go ahead with it. However, the doctors explained the possible benefits of such a surgery. Not only would it prevent the tumor at the baby’s back from growing further but could also help him learn to walk after his birth. Additionally, it could also reverse the effects of his Chiari 2 malformation, which causes the brain tissues to extend into the spine (2). Generally, a shunt surgery is used to correct this after birth (3). However, such a surgery would reduce the chance of a shunt requirement after delivery (4).
The surgery itself was quite complex. It required the opening of the womb, removing the baby’s spine out (partially), and operating on the defect. After this, the baby had to be put back in to continue development. Although it was a first for the hospital, it wasn’t the case for the doctor performing it.
After weighing the benefits and risks involved, Reinkemeyer and Skain decided to go ahead with the surgery, nearly a month after it was first diagnosed.
Baby Jackson (as he is now called) was just a pound and 25 weeks old when he first entered the world, albeit partially! The neurosurgeons cut open the uterus and operated on the baby’s buttocks and the back where the defect was. After they were done, the baby was put back into the uterus and it was closed surgically. Although this complex surgery was initially scheduled for 6 hours, it went well and was successfully completed way ahead of time, in four hours.
The surgery was quite painful for Reinkemeyer as she even started experiencing contractions, for which she spent 7 days in the hospital. Thereafter, she was on a strict bedrest for 10 weeks. But, as Reinkemeyer later confessed, it was all worth it. Initially, the doctors had planned to push the due date to 37 weeks of her pregnancy. However, the loss of amniotic fluid resulted in an early birth, at 35 weeks. When Jackson was finally born (again!), he weighed 4 pounds and 9 ounces. After 12 days, he arrived home on New Year’s Day!
Despite all their fears, both parents are now happy that they took this decision. As it turns out, baby Jackson is now doing great and meeting his milestones well. He’s undergoing correction for his clubfeet. His corpus callosum is also missing right now, but Reinkemeyer and Skain are hopeful it’ll all be fine one day. As of now, they are basking in the glory of being Jackson’s parents. They also dedicate a chunk of their time to raise awareness about spina bifida. We wish them, and baby Jackson, good luck and the very best in their lives!
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