About Case.

Let me tell you all about the boy that is the inspiration behind A Very Special Family.

Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and favor, that is the definition of Grace. That is what God was doing by giving be a perfectly, imperfect baby. He was giving me His blessing and favor.

Those sonograms only got worse and harder. By the time I was 38 weeks pregnant it was safer to have Case on the outside rather than slowly dying on the inside. They told me not to expect him to live past birth and if he did survive to know that he would have a low quality of life. Thank God they were wrong.

Case was born via c-section and thrown into a sea of NICU Drs and nurses, then promptly flown to Children’s Hospital NICU. He was 2 pounds, 13 ounces and 14 inches long at full term. He had heart, kidney and brain defects along with a slew of other issues.

After 5 weeks in their NICU it was time to go home!

As Case grew, they started finding more and more issues in his tiny body. At 11 months old, after pumping, fortifying and trying to feed him bottles, it was time for a Gtube. He has a sub-muccus cleft palle, stomach, intestinal, and swallowing problems. His tiny, 9 pound body needed help and needed to grow. He had his tube placed on a Tuesday and that Thursday was Thanksgiving. We spent lot of holidays in the hospital. That was just one of many.

Case’s original diagnoses were, Failure To Thrive, Skeletal Dysformities, Multi-Custic, non-functioning left kidney and Hydronephosis in his right. Case also has several variants of his heart, lacked growth and other vital hormones and was born with multiple birth defects. Those were the health issues we left the NICU with. We felt confident we could handle all of that but as the months and years went on, they kept adding more and more specialists and finding more and more conditions. Crainio Synostosis: Some of the sutures in his scull fused shut too early causing increased crainio pressure and required a full brain-scull surgery called Crainio Vault Repair.

A Tethered Spinal Cord: this was released by a Nerrosurgeon.

Chairi Malformation

Neuropathic Dysmotility Disorder in his intestine. The nervous system that controls his intestines is broken. It sends signals for the intestines to contract constantly and has to be controlled by multiple medication.

Peusdo Obstruction in the Intestines.

Multiple Intussception: Because of the severe intestinal issues, Case went into Intestinal failure years back and needed IV nutrition to live. He had a semi-permanent IV in the artery by his heart for 5 years.

Hypoglycemia

Russel Silver Syndrome: A form of Dwarfism

Case has had around 30 surgeries and has been very, very sick at times. In July of last year his little body went into spite shock. Thank God and Children's he is okay.

Though the Drs have found many separate diagnose, the Genectics team at Children’s is still looking for a main diagnosis to pull it all together and make sense of it.

t’s been a CRAZY 8 years. There were times we thought we’d lose him. There were times we thought it was all too much to bear but by the grace of God we are all still standing. Case is thriving. His life is more normal than it’s been in a long time. He’s on 12 hours of tube feeds through a tube straight into his intestine. He’s on several meds 4 times a day and gets daily growth hormone shots. He’s our miracle and we can’t imagine life without him.