"Hope" Elizabeth Niemiec

May 26, 2007 Saturday

Quite a few of you have been asking about my sister Cheri's baby. The last entry I made was about her going into labor. And I was excited for her.

I did not further mention in this blog, if it was a boy or girl and how the whole labor came along. I myself was in limbo not knowing what the news was as I could not get a hold of any family members, nor could I just pop in and see my sister as she lives in the Chicago area. In addition, the nurses would not give me any information due to the HIPAA law (Health Insurance Portability and Accountability Act). If they did, it would be a serious breach of patient confidentiality. Frustrating, when you really need to know if your sister is ok.

Finally one of my brother's, Fredi, tells me the news...bad news. I had to ask over and over again if he was kidding me, and he could only say he wish he was. I had a big lump in my throat, and I wanted to cry...and I wanted to speak to Cheri, but knew she did not want to speak to me, at least not now. So I could only send her a message, to contact me when she was ready.

Hope Elizabeth Niemiec was born on March 19, 2007 at 11:16pm. She was 7 pounds, 13 ounces and 20-inches long. Despite the epidural, labor was difficult for Cheri, as she was born with her head facing the wrong direction and was stuck in the birth canal for approx. 2 hours. Finally, Elizabeth appeared (no c-section) and it was then that Cheri noticed something was not right. Even my mother had missed it...the baby had deformed hands. Within seconds, a team of medical personnel rushed in and took Elizabeth away.

My sister was devasted.

I had not known that there was suspicion of possible complication during her pregnancy. Cheri had an ultrasound that alerted the tech, as the fetus was missing the bridge between the left and right hemisphere of the brain. This concern led to a MRI, which concluded the bridge was present but 'thin'. The neurologist was not concerned, informing that motor vehicle victims that have diagnostic tests done, may be found to have this missing bridge, yet they fully function well. And when the doctor didn't appear worried, my sister did not worry. She also decided against an amniocentesis, as she had it in her mind (and in agreement with her husband Matthew, ) that they would not abort the fetus no matter what.

So yes, it was a shock to the family. Hope was born with an elongated head and with no brow. Her fontanelle's (the soft spots) on the top of her head and at the temples had closed well before she was born, therefore forcing her head to grow upwards. Her feet are webbed. The bones are present but the skin did not seperate. And the fingers of her hands are joined, (with the exception of her thumbs), and they share the same nail. The best way to describe this would be like a "lobster claw".

I was in despair for over a week, my heart was too heavy, and I was looking to blame God for this. I mopped, I couldn't think of Cheri without starting to cry. And my heart went out to her, thinking how she must have felt, for a nightmare like this to materialize. And then I thought of Hope...and I hoped she would not have any neurological damage, and hoped that our medical technology could do something to release her little toes and fingers... so she wouldn't have such difficulty as she grew older.

Cheri called me a few days later, describing all this in detail, how she was hurting so much, how she could hear babies crying and being tended by their mothers...and here she was in the hospital for the night, not having her own baby to hold, as Hope was admitted to the Children's Memorial Hospital in Chicago. Cheri was miserable. When she was finally released, she and Matthew visited Hope, Cheri still in a wheelchair, (unable to walk for a couple days) as she was in pain and her legs were not strong enough to support her.

I am not sure when Elizabeth was given the name "Hope" - whether it was at birth, or months before. But yes, she does instill a lot of hope in us all- that she too would still have a chance to have a happy and fulfilling life, and hope that life would not be difficult for her.

This condition she was born with is called Apert Syndrome, which affects about 1 in 100,000 individuals. This would not have been detected in an amniocentesis had my sister had one, as it's occurence is rare and there are so many other anomalies to test for- Apert would not have been suspect.

And with my sister's permission I was allowed to discuss this (I also wanted to make sure she was ok with my blogging)- and this information may not be accurate, but it is close enough.

To read more on Apert's, please click here: apert sydrome

Hope, will also be having cranial surgery come this August. Please e-mail my Cheri and her family your good intentions. I think they will greatly appreciate your words of encouragement. cdniemiec@yahoo.com

And with love, hugs, and kisses- I still welcome Hope into this world...and we hope you will too.