Tuesday, August 11, 2015

August 11 - Dear Nicholas Sparks (Guest Blogger Dawnn Matthews)

Dear Mr. Sparks,

I was 35 years old when Glen & I found out that we were finally going to have a baby. We were trying forever and finally we were blessed.

I had a very easy pregnancy, but because of my age, I was sent to a high-risk pregnancy specialist. During my sonogram, the sonogram specialist called the doctor over and asked, "Did you see this?" As they talked, I started to get nervous. Something was obviously wrong. The doctor started to tell me that our baby had a birth defect called a congenital diaphragmatic hernia. Like all of you reading this, I was in shock. What is this? How did it happen? I had a million questions, and the answer was always the same... "Every baby is different" or "We won't know the severity of the defect until she is born.” We went through 9 months knowing that she had a 50/50 chance of survival.

I tried to get information about CDH on the Internet. The more I read, the more scared I became. I found the CHERUBS website and used it as my bible. We decided to go to Saint Christopher's Children's Hospital in Philadelphia, after we were introduced to Doctor Douglas Katz, one of their surgeons. Doctor Katz took the time to meet with us and explain everything that came with CDH. When it was time to deliver, there was an entire team waiting to take care of Sydney. We prayed that she wouldn't need ECMO and that her defect would be a minor one, but that was not the case. Doctor Katz told us that she would need ECMO, and she was put on the machine. For the next 37 days, I lived at St. Christopher's Hospital. Sydney had the most wonderful neonatal & ECMO teams taking care of her. We have never met such wonderful people in our lives. We will never forget them.

Syd's defect was severe, but she fought with strength that was unbelievable. When she was finally strong enough for her surgery, we were told that she had almost no diaphragm at all, everything was up in her chest. She had only one lung, & they weren't sure if it would be enough to support her. Doctor Katz constructed a diaphragm for her out of gortex. Her spleen had to be removed & all of her intestines couldn't fit back inside of her stomach when the surgery was completed.

She spent the next week with a bag called a silo suspended over her stomach with her intestines inside it. It is hard to imagine having to see your precious new baby like this. I don't know how we got through it. Her stomach finally stretched enough to fit everything inside.

After five weeks on ECMO, it was time to see if Sydney's lung would be enough to support her. It wasn't. We were faced with the hardest decision a parent could have. Sydney would have to be taken off of the ECMO machine.

It wasn't fair. Why would she conquer every obstacle she had to face for five weeks, only to find out that her lung wouldn't support her? The only way that we can get through this is to believe that Sydney was giving us as much time with her as she could. She fought for US. For us to get the chance to see her beautiful face & have her hold our fingers with her tiny little hand & look at us with her beautiful eyes. Thank you, Sydney, for holding on as long as you could for your mommy & daddy. I know that my tiny little angel is still with me and always will be in my heart.

Sydney's mom, Dawnn Matthews (New Jersey)

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