Strong. That’s not a word that most people think of when they describe children. However, for our family, that word became our mantra on August 5th of 2012. My husband Aaron and I were already parents to boys Shawn, Josiah and Jacob and had custody of our niece Destiny. We were all so ready to meet the newest member of the family Lukas Benjamin. Delivery was complicated with the meconium present but I was confident in my midwife and the nurses there with me. The words “there’s something wrong with his back “along with a very pronounced gasp of disbelief soon rang throughout the delivery room. The next hour was spent in shock as my midwife and attending doctor came to the room to tell me that something was wrong with Lukas. Spina Bifida was the diagnosis. I was in disbelief. How did this happen to us and to my baby? I was high risk due to gestational diabetes and therefore required weekly ultrasounds and stress tests. Lukas was transverse until right before delivery also. The ultrasound should have showed the Spina Bifida my doctor kept saying. He was in disbelief also. That was the first time in our marriage I ever saw my husband break down in tears. The choice was given to us for Lukas to be taken from Dalton to Atlanta for his surgery and prolonged hospital stay. The next few hours were a blur of anger, shock and grief. What is this Spina Bifida that they keep repeating to us? Once I arrived at Childrens Healthcare of Atlanta, I was given a book. A how to of what to expect when your child has spina bifida. I thumbed through it, reading as the author talked about the fact that my child will possibly never walk, may never urinate or have bowel movements of their own, and to expect that the effected child will be wheelchair bound. I immediately threw that book in the trash can. I knew he was stronger than anything that book said. Lukas had spinal closure at less than 8 hours old. It was over a 5-hour surgery to put his spinal cord and nerves back inside his body instead of the pouch that was residing on his back resembling a blister the size of a grapefruit. Neither I nor his father were able to hold him until he was 5 days old. At day 10 he received a VP shunt which kept the spinal fluid from building up on his brain. The next year of his life was spent at weekly doctors’ appointments where I was convinced his shunt would fail, checkups and monthly scans of his back and brain. He started therapies for physical and occupational also. Our weeks were consumed with appointments. He had to be fitted for AFOS (braces that keep his feet straight). The book was correct in the regards of Lukas not being able to urinate on his own so I had to catharize him every 4 hours. That catherization’s resulted in urinary tract infections. So, at 13 months old, he had another surgery to make a hole his urine would drain from giving his kidneys a much-needed rest. The next few years would have more surgeries including his tonsils and adenoids removed, and speech therapy was added since Lukas was nonverbal until he was 2 1⁄2 years old. Christmas of 2017 came the surgery of his spinal cord to be released because it had started to tether back to his spine causing lots of issues. That surgery was so hard for him to recover from because he had to be prone on his stomach for 23 hours of the day. Lukas enjoyed a whole year without major surgeries and issues until the day of September 5 when he should have been getting ready for his first day of second grade. Instead the next 2 weeks were spent in Atlanta again recovering from a shunt revision and an extremely bad UTi again. This past summer Lukas had a major bowel and bladder surgery hoping to give independence. As he never likes to do anything halfway, this surgery would be the hardest for him to recover from. He spent 11 days in the hospital and the whole summer in drainage tubes. Through all of these surgeries and his weekly therapies he has never lost his strength and his curiosity. He talks a mile a minute especially about his passions which are LEGOS and anything Science related. It has been an adjustment the past few years for the older kids to be patient and show more compassion for their brother but all 4 of them have been phenomenal. Whether they are raising money for Spina Bifida research through our local walk and rolls, or just visiting him in the hospital they have shown how strong they are in making sure their brother has the most normal life ever. I try to always make sure that Lukas understands every aspect of his disability from the Spina Bifida, to the hydrocephalus or the sensory processing disorder he has to show him that he can do the same things other kids his age is doing, just in a different way. I pray he never loses his sense of self and ability and that his siblings always show compassion to others that are different than their selves. For the Killham family, we like to say our house is “Spina Bifida Strong”.
Gift: Swing set, tablet, spider swing and power wheels
Given: June 2020
Location: Chatsworth, Georgia