When I was pregnant with Nathaniel, I worked full time as a computer programmer. I was also attending the School of the Art Institute in Chicago. I was working on my Master’s degree in Art. I love art. I love art history. I love setting up a canvas and involving yourself so completely to the process of creating a painting. I miss it.
I had planned on staying home, I quit my computer job. I put school on the back burner. I had worked full-time when my older kids had been young and didn’t want to juggle that again with a newborn. I was looking forward to working in my studio and developing my art. I was looking forward to falling in love with the new little man of the house. I was looking forward to welcoming my Muse to the world.
Instead, I had no job, I had no baby and I had no art.
Instead, I had sorrow, I had heartache, I had an overwhelming sense of nothingness.
Of course, I had 2 older kids that needed me, a husband that needed me, so I functioned. I was on auto-pilot. The kids got to school, the house got cleaned, the food got cooked.
Life goes on.
It’s just not the same life.
I found out I was pregnant again in May of 2002. I was joyful and devistated, all at the same time. By then the genetic doctors had confirmed the diagnosis of citrullinemia.
I had an ammniocentisis done at 16 weeks. They could tell me if this baby was going to have the same disorder. It would take about 3-4 weeks for them to get the results. When a genetic disorder is indicated, there is a 25% chance with each pregnancy that the child can be affected.
It was a very long 4 weeks.
An interesting side note as we wait…. Baylor University in Texas has the only lab in the country that runs these tests. The liver specimen taken from Nathaniel was sent there, along with ammnio fluid from each subsequent pregnancy. They know us very well at Baylor.
Luck was on our side, Jacob Harley was born February 23, 2003. The day before my 32nd birthday.
He was unaffected by Citrullinemia.
Life goes on.
When Jacob was a year old, we decided to move to Ohio. Jamie was homesick, he didn’t like living in the city, country boy that he is, he wanted to go home. We also wanted a house. We couldn’t afford one in Illinois, we could in Ohio.
We took possession of our house on April 19, 2004.
That day I realized I was pregnant, again.
Life goes on….
Really? Pregnant? Again? But we just moved here and bought this house (a major handy-man’s special, I might add..) and Jacob’s still in diapers and I don’t know anybody down here and I don’t have a doctor and I have no idea where anything is and what if….
Okay, first things first. Find a doctor. We moved to a small town about an hour and a half east of Cincinnati. Are there doctors who specialize in high risk pregnancies in a town this small? I had no idea. So I opened my freshly delivered phone book and voila! Doctors! Having no knowledge of any of them, I simply called the first one listed.
I think I might have scared her a little when I explained our history. I do recall her saying something to the effect of “oh hell no, we don’t handle patients like you” Of course, maybe that was my imagination. She did kindly refer me to the Seton Center at Good Samaritian Hospital in Cincinnati. They know me very well at the Seton Center.
Ammniocentisis at 16 weeks.
Phone call from genetic counselor. She didn’t want to discuss the results over the phone, so I had to make an appointment for the following week. I spent that week trying to come up with reasons she needed to see me in person if the news was good.
Yeah, I couldn’t come up with any, either.
Finally the day of the appointment, I drove the hour and a half to the hospital, crying the entire way there.
Simple, direct, right to the point – the test confirms a diagnosis of citrullinemia…
*crashing….darkness…I think I forgot how to breathe…*
You need to talk to the genetic doctor at Cincinnati Children’s. Call for an appointment, immediately. Good-bye, Have a nice day.
*still crashing…..crushing really…..falling…….really, how do you breathe…*
I drove the hour and a half back home, crying all the way.
Appointment made. Another week.
By now I am 21 weeks along. The thought of an abortion had never really crossed my mind, that is, until I met the genetics doctor at CCHMC. She was very persuasive. It was obvious to her that having this baby was not a good idea. She had seen the devistating effects the citrullinemia had on children. She took care of their bodies long after their brains were destroyed. She would not knowing wish that life an anyone.
I am embarrassed to admit, I thought about it. I even called a clinic. But, I couldn’t do it. I was willing to accept this baby in whatever package he came in. I would do whatever I had to do to make sure he received the best of care.
I would make sure he was loved.
So I politely let the doctor know that I would be having this baby. She quickly shifted her mindset. Maybe because I did not cow to her expectations. She stated a simple fact. His absolute best chance at a normal life, without daily risks of brain damage from high ammonia levels, was a liver transplant.
A liver transplant?
*darkness…crashing…forgetting how to breathe….*
Was I able to subject this baby to a major, life-threatening surgery, a life of immunosuppression, reduced activity, hospitals stays, pain?
Yes. Yes I was. I admit it. I traded one problem for another. I said “NO” to treating his citrullinemia and living in fear of brain damage. I said “YES” to a major surgery and the hope, the slim thread of hope, that my child would have a chance at a normal life.
Genetics put us in contact with the liver transplant team. The liver transplant team knows us very well.
Since this is where Jonathan’s story begins. I will stop here and continue on his own page.
Life goes on….