Defying Odds - Ezra's Journey & Cloacal Exstrophy

Hello My name is Maria.

The past few months have been filled with considerable information and insight into our lives for the first few months & years of Ezra’s life.

Because of the sheer volume of information we had received from the entire surgical and doctor team, we think the best way to convey the projected course is to outline (generally) the steps that will be taken leading up to and after Ezra is born.

This will not be a typical “to term pregnancy” or the standard “9-month pregnancy,” if you will. Instead, this will be a planned delivery due to the sheer magnitude of corrective surgical procedures that need to be completed. This will allow the surgeons and doctors to be present and readily available to perform the appropriate surgeries and corrective actions based on already established issues and any additional variables discovered at birth.

The team will consist of:

Colorectal Surgeon

Urologist Surgeon

Orthopedic Surgeon

Obstetrics Doctor

Support staff

The first order of operations is to sustain life. What exactly does that mean? In Ezra’s case, the first thing that must be done is a colostomy be put in place. Since Ezra lacks the lower part of his digestive tract, anus, and colon. This will allow Ezra to eat and digest, process and expel waste.

They will take the bowel and attach it to his abdominal wall to provide a location for Ezra to have a colostomy bag attached.

The second issue that will be addressed is Ezra’s bladder. His bladder seems to be in 2 hemispheres. Instead of one organ, it has formed a split at the pelvis. The bladder will need to be reconstructed if possible. This, again, is something that the surgical team will evaluate as above to determine the extent of reconstruction required and if its plausible to be performed immediately after birth.

The third issue is the evaluation and potential closing of the Omphalocele in Ezra’s stomach. The defect (Referred to as the Omphalocele) in Ezra’s belly that allowed his organs to begin growing outside of his abdominal wall can develop or digress along with the remaining “term” of our pregnancy. The extent of this can only be determined once Ezra is born.

The fourth issue that will need to be addressed is Ezra’s pelvis. His pelvis, just as his bladder was not formed, fused. (Left and Right side). Each half will be fused. Once this is complete, Ezra will be placed in traction. This is a practice that will keep Ezra still while he heals.

The fifth issue that will need to be addressed is Ezra’s penis. As with the other defects (Pelvis & Bladder), the flaws rippled south after his pelvis did not form in the 7th week of pregnancy. As a result, the penis is split into two sides. One on one half of the bladder and the other on the other half of the bladder. This will be monitored over an extended time frame to be performed post-delivery and remedy the other “life-sustaining surgeries”.

The sixth issue that will need to be addressed is Ezra’s right leg. We have a meeting with the Pediatric Orthopedic Surgeon on the 25th to determine options for Ezra’s leg, whether reconstruction, amputation w/ prosthesis or other viable options.

We asked the big question to the surgical team. “How long can we expect to see Ezra staying in the hospital once he is born.” The simple response is that it depends on the extent of the actual “hands-on examination” post-birth and how the surgeries listed above go; HOWEVER, we can anticipate spending the first few months of Ezra’s life living at Hopkins. This is the best place for him.

This will allow a team of doctors and nurses to monitor and care for him around the clock while he heals and gets stronger from his surgeries. Furthermore, we can expect to spend the first few years of his life with follow-up surgeries and visits to Hopkins.

With Ezra being in the hospital for such an extended period, there will be a point in time when we are out of leave from work. While we both work for a fantastic employer, we need to make sure that we have an ample amount of money saved up so we can spend as much time with Ezra as possible.

The money raised will be used for Ezra's medical treatment, supplies for taking care of him once he is able to come home, extended medical treatment once he is home, assistance with bills while we may be out of work & everything in between.

It is said that children with this condition are a bit delayed in development because of the time they lack being stimulated by interactions with the parents. Therefore, we are going to do everything we can to give Ezra our time and energy every single day once he is born.

We appreciate and welcome any and all prayers and warm wishes during this trying time. It has been so very healing to feel the love and support from our friends, family & colleagues. <3

Love,

Ezra’s Mommy & Daddy