A Special Needs Family

Originally posted 09/02/2008

A Special Needs Family

I am writing this story to share with my friends and the world if the world wants to read it. I am a devoted husband and a loving father. I could not think of anything that makes me happier or brings greater joy. I have two children…a boy and a girl. My son is 2 years old and my daughter is 10 months old (at the time I originally wrote the story). Both of my children are the light of my life and I would do anything for them. They have grown so much and shown so much personality in the short time that they have been around. My kids have also taught me more about children and myself than I ever imagined. My kids are both special needs children. Here is our family story.

It is the year 2005. My wife and I had been married for about 3 years at this point. We both we wanted kids. We decided that we would start trying to have a child. It wasn’t really a planned issue like using ovulation monitors and all. It was more like “if it happens, it happens”. Well, after about four months of trying, we found out Jennifer was pregnant with our first child (Zach). We were thrilled, exciting, joyous, etc. We were going to be parents. It did bring a little bit of fear for the unknown, but the joy and excitement outweighed it all. We told our parents after the first trimester and they were all thrilled as well. Things went wonderfully well through the first twenty weeks.

As you know, the week twenty appointment is the one where you get to find out the sex of the child. Jennifer and I disagreed on whether to find out or not. I wanted to know because I am a planner and she did not want to know because she wanted the surprise. We went to the appointment and the ultrasound tech started doing the ultrasound. We were amazed at the pictures that we were seeing of our son (we didn’t know that it was a boy at that moment). Then the moment came where the tech asked us if we wanted to know the sex of the child. My wife and I playfully went back and forth for a moment. The tech continued to look as we tried to decide. Before we could decide, the tech said that she needed to know the sex because there was an issue. We then said that we wanted to know. She informed us that we were having a boy. The issue was the fact that his right kidney had a blockage or obstruction. The OB-GYN wanted use to go see a Perinatalogist, which essentially means a “high risk” pregnancy doctor.

We started seeing the Perinatalogist because of the obstruction in the left kidney of our son. It was causing fluid to back up into the kidney and enlarge the kidney. I think that is called kidney reflux. Each week that we went to the Peri- Dr., the kidney kept getting larger and larger. At week 28 and the only Peri- Dr. appointment I could not get to, the Dr. told Jennifer that Zach now only had one kidney which was the one with the obstruction and that the other kidney would never form. The Dr. also find the neurological issues at that time. Originally, they thought Zach had hydrocephalus (water on the brain). Then they thought it might be epilepsy. The Dr. then thought it was “enlarged ventricles” in the brain which would cause developmental delays. Finally, the Dr.’s at the Perinatalogist office agreed on “areas of missing white matter” which are causing his current developmental delays. He also had a thinned corpus collosum and cystic lesions on his cerebellum. As you can imagine, we would have to start seeing a Neurologist and a pediatric Neurosurgeon for further assistance.

The day had come where it was time for Zachary to arrive. We rushed to the hospital (Southern Regional) from Peachtree City to Riverdale during rush hour (good times!). We got to the hospital and were immediately admitted. The nurses had to slow my wife’s contractions down or she would have not been able to have the c-section that the Dr. ordered. Jennifer delivered a healthy 9 lb, 14 oz. boy at 11:58 p.m. We had no idea what was coming next. After Jennifer gave birth and they showed me my son, they whisked me out of the delivery room and my son to the NICU.

The Dr. on call told me that Zach was born with a rare condition called Eagle-Barrett Syndrome or also known as “Prune Belly”. This condition happens in 1 in 40,000 births. The condition characteristics are: being born with no abdominal muscles, an oddly shaped bladder that will never full drain and have to be given a catheter to drain (will always be at risk for a urinary tract infection and takes meds for), a diminished lung capacity which makes flu season fun, the inability to “poop” so he takes meds once a day for it, undescended testicles which have to be surgically lowered, and could have major other kidney issues which we have yet to have (thank God). The Dr.’s did not know why he had it. They called Scottish Rite that evening to get him transported up the next morning. My son spent the next 10 days in the NICU at Scottish Rite. We had eight “-olgoists” and other Dr.’s.

Since leaving Scottish Rite and the subsequent years after, Zach has see Scottish Rite and his specialist many times. He has had 5 surgeries (with one more to go), 1 Grand Mal Seizure, 2 unexplained/uncontrollable "twitching" episodes that were not seizures, 8 MRI’s, 1 Sleep Study, 1 Swallow Study, 2 EEG's, 1 CT Scan, numerous x-rays and ultrasounds, lots of blood work done, has worn an orthotic helmet, wears orthotic AFO’s, wears a binder brace for his midsection support, and uses a walker. He sees a Neurologist, Urologist, Pediatric Neurosurgeon, Physical Therapist, Occupational Therapist, Speech Therapist, and Horse Therapy on a regular basis. He has not said his first word, crawled or walked yet. He is getting very close to crawling with the advances he has recently made. He now attends an AWESOME, private school called The Joseph Sams School (which caters to special needs students only). He has made leaps and bounds when it comes to catching up on his developmental delays. He is a very personable, lovable, little guy who is the biggest fighter when it comes to overcoming his struggles.

My wife and I always wanted more than one child. We always wanted at least two. Many people in our family disagreed with us on having another child after having our son and all of his special issues. We understood their concerns, but we still wanted another. Our thought was always, “If we were meant to have a special needs child, then we were meant to”. We found out in about Feb. 2008 that Jennifer was pregnant again. We immediately started seeing the Perinatalogist for our second child because of the high risk nature that Zach was. It was done as a precaution. We went on a more frequent basis up until the week 20 appointment. At that appointment, we found out that our second child was a girl. We were thrilled. 2 tries = 1 boy and 1 girl. At that time, there was nothing out of the ordinary. Then came the infamous week 28 visit.

The week 28 visit showed that my daughter had fluid building up around her right lung and only the right lung. The Dr.’s were puzzled as to what was causing this fluid build-up. The Dr.’s stated that fluid build-up was bad because it could stunt the growth of the lungs. They explained that we needed to remove the fluid from around the lung by performing an “amnio”. I have always been against this procedure. The Dr.’s basically said they would take a needle, go from outside my wife, into the uterus, through the amniotic sac, through the chest of our daughter and to the lung to drain the fluid. How crazy is that? After the amnio was performed, they would test the fluid. We also had to be concerned with premature birth since now there was a hole in the sac which would help it to rupture. That added to our pressure of making a decision. The Dr. said we had a little bit of time, but not much to make a decision especially since the pressure on the lungs was building.

I prayed and prayed and prayed about help with that decision. The day came where Jennifer and I had to tell the Dr. “yes” or “no”. We didn’t want to, but we told the Dr. to go ahead for the health of the child even though I was against the procedure and very concerned about. Then the most miraculous thing happened. The appointment that Jennifer went in to have another ultrasound and to set up the “amnio” was an ultrasound appt. The Dr.’s wanted to look at the baby one more time. The Dr.’s looked and looked and looked. They appeared to be puzzled. They looked back at their notes and even asked us what they told them the last time we were there. We told them about the decision for the “amnio”. The Dr. turned the monitor around and said that he was baffled because all of the fluid had disappeared just as quickly as it came. He could not explain it. The Dr. said that we did not have to have the test anymore. Jennifer then went on to have a healthy 10 lb., 3 oz baby girl at 7-something in the morning. We were known as “You are the couple with the BIG baby”. We had no reason to believe Samantha had any issues.

One day Zach’s occupational therapist came over to the house with an intern. The intern asked if she could assess Samantha to give her practice. We said that she could just to see what the test would say. Well, to our shock, it said that Samantha was delayed. We did not understand why. We did not believe the intern or the therapist. So we went to our Pediatrician and she agreed with the OT and the intern. We then made an appointment with Zach’s neurologist for Sam. The neuro. Dr. wanted Sam to get a CT scan. So we did. The scan showed that Samantha did have similar neurological issues as our son that would cause the delay. A couple of months went by and things were not getting any better so we went back to the neurologist for Samantha and the Dr. wanted an MRI for Samantha. We had the MRI done.

Samantha has “areas of thinned white matter” which cause the developmental delays, a thinned corpus collosum and her brain has atrophied some (the neuro. does not know why yet). Samantha has had one round of genetic testing done to see if they could find a link or correlation to something since Zach as such similar issues. They did not find anything and we are now on to round two of the genetic testing. We just want a name to it so we can call it something other than “generalized developmental delays”. Samantha now sees her Pediatrician, a Neurologist, and Physical Therapist on a regular basis. She also wears an orthotic helmet and an eye patch. She will also need a stander and some other adaptive needs equipment. Even with all of this going on for her, she is a fighter. My daughter is a very happy, determined, stubborn girl who wants to make her own decisions (HA!).

I guess the reason that I write this is more to inform than to be a “sob" story or wanting to be a “charity” case. It is my goal to teach my children independence and that they can do anything they put their minds to. I want them to work for the things they want in life and not to be handed to them. They need to learn to earn what they want and not to have it given to them. I don’t want to sound harsh, but I also don’t want any more obstacles to be created. Do you understand? Anyway, that’s my story and I’m sticking to it.