Thursday, October 29, 2015

October 29 - Dear Nicholas Sparks (Guest Blogger Marlene Pytyck)

Dear Mr. Sparks,

My husband and I were married about 1 ½ years when we found out we were pregnant. We were very exited! When I went in for my 18-week ultrasound, I had no thoughts of problems whatsoever. What an incredible shock it was when the technicians brought in their supervisor, and he said to me, "I would like to tell you everything is okay, but I'm afraid I can't." He asked me to go speak to my doctor. I was alone since my husband was out of town with work. I went to my doctor in a state of shock, and so many things went through my head. I couldn't believe they saw something wrong. how bad could it be? I guess I was incredibly naive since I didn't think they ever found things wrong in an ultrasound but just confirmed there was a baby in there and check for twins or stuff like that.

When the doctor told me that our baby had a diaphragmatic hernia, she didn't beat around the bush with telling me how serious it was. I just couldn't believe what I was hearing. Then the doctor told me we should run other tests as soon as possible since chromosome problems and heart defects are very often associated with this condition. I didn't even really know what "chromosome" problems meant, but she made it sound very bad and the outlook for our precious baby very grim. What a nightmare! I called my mom to come that afternoon to be with me, and they did an amnio that same afternoon.

Then came the waiting, amnio results, echocardiogram, ultrasounds. We found out we were expecting a boy even my husband could tell from the ultrasound. Ben wasn't shy! Somewhere in this "hell" we were told something I had never heard of before. When a baby is diagnosed with something so serious the parents are given the option of terminating. We chose to continue the pregnancy and give our baby boy every chance we could give him. I can't describe how happy I am that we made that decision. We named our precious son Benjamin Michael. He was the perfect baby while I carried him! Our test results showed no other associated problems, but the doctor still told us that even isolated cases of CDH were extremely serious and not to get our hopes up.

My husband did tons of scientific research about this condition and showed me the CHERUBS website for my support. We learned as much as we could about Ben's condition. I must admit it was very scary, but it helped to know we were not alone. Meanwhile, Ben was such an active and happy little guy. He loved kicking up a storm in the evenings, and I never had any polyhydramnios or any other problems. It was very difficult not to get our hopes up when at every ultrasound Benjamin got perfect scores (except one where he just wanted to give us a little scare but everything was fine!) He even did his practice breathing and everything! It was a very difficult time, especially with people asking, "Are you excited? Have you finished the baby room?"-- all well-meaning questions, but they cut like a knife. I couldn't bring myself to make a baby room, but I had friends, cousins, and a sister who had stuff ready for us at a moment's notice if we could take our Ben home.

Benjamin was born on October 25, 2000, by an emergency C-section because I had an abruption during labour (nothing to do with Ben's condition, I should add). My husband Kevin got to see him come out, and he was a little purple but kicking like crazy! They immediately intubated him and gave my husband a "thumbs up" that they had him breathing! Then began a week that is still hard for me to think about. Benjamin weighed 7 lbs 7 ounces and was such a beautiful baby! He looked a lot like his daddy, but I could see me in him, too! He looked so strong and healthy, but it wasn't long before he had to go to the oscillator and then to nitric oxide. (It was later determined Ben had what they diagnosed as an "almost complete agenesis of the left hemi-diaphragm"). In the back of my mind I guess I'd hoped we could be one of the lucky ones and just need the respirator.

It was an extremely difficult week, and a week to the day he was born, the doctors called us in at 5:30 in the morning and Benjamin's condition had gone dangerously downhill, and his blood gases were so low that they thought it was time to withdraw life support. (This had already happened a few times earlier, but we always had a few doctors say that maybe it wasn't quite time yet, so we would hang on a little longer). We did have a few glimpses of hope during that week, but Ben was very sick and never even close to stable enough to think about moving him for surgery. We had excellent care for Ben and for myself. Ben had a full time nurse to himself every hour of every day, but his lungs just weren't strong enough to sustain his precious life.

Only those people who have gone through something like this can understand this indescribable experience. Benjamin's Mommy & Daddy & Oma (Grandma) were right there with him when he died and his Opa (Grandpa) and Auntie Krista very shortly after to say goodbye. I still can't believe we survived this without dying ourselves. Despite the pain, I have never regretted our decision to give our son the nine wonderful (although often bittersweet) months he had in my tummy. Although his week here on earth probably wasn’t that great for him, I am having more peace now with the fact that I'm sure he now understands that we put him through that only because we wanted him so badly to stay with us. I don't totally understand Heaven, but I know he's totally happy and that often brings me peace although our hearts have been broken. We will never forget our most precious son and all that his short life taught us. He would have been 10 months old now and there is still a lot of pain we live with every day.

Benjamin's mom, Marlene Pytyck (Canada)

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