CJ's PBS/Scoliosis Medical Journey

I had a very challenging pregnancy, diagnose prenatally with a bladder outlet obstruction and was initially managed with an amniotic shunt. This resulted in a weekly visit with specialist in Baltimore throughout my pregnancy as they performed several surgical procedures during the first few months of the pregnancy. We asked the doctors to do everything they can to help ensure that the baby will live. On November 24, 2013 my son Christian Jonathan Garcia(CJ) is born. Best day of our lives. He almost did not make it since he was born with so many complications. He was diagnose with Prune Belly Syndrome(PBS) also know as Eagle Barrett Syndrome. PBS is a rare, genetic birth defect affecting about 1 in 40,000 births. It causes the area around the belly to not have abdominal muscles along with poor urinary tract conditions. They had to put a suprapubic catheter through his bladder since his urethra was narrow/blocked. Aside from all the tubes and breathing apparatus he was on during his stay in the NICU, they had to perform another surgery on his 3rd day with us. He had a

perforated anus, which meant that CJ’s anus never developed. The surgeons had to create an opening near his belly in order for him to poop. He has a colostomy bag to collect his waste. So far my son cannot poop and urinate properly. He also has severe scoliosis, 1 functioning kidney, and several laundry list of problems. For 2 months my husband and I drove back and forth to University of MD Medical Center in Baltimore almost every single day to see our little boy get better and stronger. They finally released him to go home with us to care for him ourselves late January 2014

He had his 3rd surgery done on March 2014 to repair his anus by creating one. On May 30, 2014 he had his 4th surgery where the surgeons took down his colostomy bag and connected his stoma to his rectum.

He also sees Dr. Voight, a wonderful eurologist from UMD at least every month to perform surgical procedures several times already on his urethra and penis. The goal is to eventually have my son pee through his own penis without the use of the catheter that my husband changes every 3 days to prevent infections.

He is also seen by a spine doctor (Dr. Sponseller) at John Hopkins in Baltimore MD. He has prescribed CJ with a spine/body brace not as a corrective measure, but as to prevent his spine from getting worst. The brace also helps him sit-up straight for feeding and transport in his car seat. He has over 100 degrees curvature on his spine and will need surgery very soon.

We still go see his other doctors(GI, nephrologist, Heart,…etc) every few weeks in Baltimore while he gets 2-3 visits a week from home nurse, PT, OT, and speech pathologist. CJ has good days and he has some not so good ones. 

One of those NOT so good days was on February 22, 2015 (1 week after delivering my second baby) when CJ was hospitalized for RSV, e-coli, and pseudomonas for 17 days in PICU. He was intubated for 10 days, truly the scariest times of our lives.

 

Upcoming events:

Eleven surgical procedures has past and there are more to come.

September 15, 2015 we have an appointment with his spine doctor at John Hopkins in Baltimore MD. He will be placed in a halo traction to keep his back and spine straight for 9 days. Then followed by spine surgery by placing 2 metal rods in his back. We have an appointment on August 27, 2015 to meet with the Anesthesiologist and surgeon to find out more on how long is the hospital stay/recovery.

I stopped working ever since the pregnancy through now and probably for the next few years as my son needs someone to care for him 24/7. We have hospital bills that just seem to multiply and will never see an end to. We need your Help.