Hannah's Story
written by mom Laura

On July 14th, 1998, our lives were blessed with our beautiful Angel, Hannah. At the same time, it was turned upside down. Little did we know that from this day on, our lives would change and we would have to fight to keep our daughter alive. So began Hannah's constant battle to live and so began our fight to keep her alive and happy.

From day one, Hannah has been such a sick little girl. Hannah was born with Pierre-Robin Syndrome, which brought a whole world of problems to her. Pierre-Robin Syndrome is where the jaw in uterus does not form right causing the tongue to block the airway. With this syndrome anything within the middle of the body can have something wrong with it. In Hannah's case that included almost everything.

Hannah had so many things wrong with her little body. To tell you about Hannah's life would take so much time, so I will just tell you what was wrong with Hannah. I guess I will start at the top and go down. Hannah had Hydrocephalus (fluid in the ventricles of her brain) and had a VP shunt (a tube in the brain) to help drain extra fluid off of her brain. She had Panhypopituitarism Hypothyroidism which caused problems with her ability to grow, keep her blood sugar up and it also caused problems with her temperature regulation. She also had 3 different kinds of seizures, grandmal, petitmal and partial complex. Some to these seizures were extremely bad and scary.

She had very bad problems with her airway. First off, the jaw and the tongue base blocked Hannah's airway. She also had tracheal and bronchial malasia (her lungs and throat collapsed, because they were extremely floppy). Her lungs had severe problems. She was an oxygen and ventilator dependent. She had a trach (a tube that went through her throat and into her lungs) which helped her breathe.

Hannah had a stroke at some point in her life causing left side weakness and had many developmental delays. She had Cerebral Palsy which caused spasms and pain in her muscle. She was hearing impaired and wore hearing aids. She had many problems with her intestines and stomach. Her intestines were rotated the wrong way and had to be fixed.

Later, Hannah was diagnosed with Neurofibromatosis which caused cafe-au-lait spots (brown birth marks), she had many of these birth marks. Every time we thought we turned the corner, something else major came up. We were then told that her brain was atrophying (shrinking).

Hannah was a featured child here on MACS in April of 2001, I thank God we found Alex and her website. She gave my little girl a lot of smiles the last year of her life. We found out in May of 2001 that there was nothing else doctors could do for Hannah.

Over the next year Hannah had to have 7 or more surgeries to help her live. Each time, we thought we were going to loose her. In September we took her and her brother to the beach and we had a wonderful day. We took her to see Bear In The Big Blue House and got to meet him back stage. She had such a wonderful time. We also took her to the Butterfly House. Hannah had a great day and I had a wonderful day just watching her.

During the last year we had a lot of ups and downs and some very close calls. Several times Hannah tried to leave us and just as she got to the doorway to Heaven, she came back. Each time we thanked God for allowing us more time. In December 2001 Hannah had a massive stroke and she went into a coma. They told us on Christmas Eve that she would not live 24 hours. But she did By the Grace of God and she came home.

She did well over the next few months, we still had some really close calls but she came back. They still said Hannah was in a coma but she was starting to do things, moving her hand and pushing her switch toys, licking her suckers and sucking on her much loved passy. She also did something they said she would never do again, she smiled and made little kitty sounds (she would go ooo and aahhh) she could not make many sounds because she had a trach and was on a ventilator (machine that helped her breathe). We thought that Hannah was going to show them all what she was made of.

Then on April 17th, 2002, we had to go back to the hospital. Hannah was admitted to have some changes made to her ventilator. All was going pretty well. Hannah and I spent the afternoon snuggling and reading books, it was just Hannah and me.

At 10pm on that same day, Hannah and I were reading a book, one of those touch-and-feel books. Hannah got very blue so I called the nurse and she came in. We started bagging (breathing for Hannah with an ambu bag). Hannah made a little sound and I leaned down, face to face with her and told her "It's OK, Mommy's here". At that time, in that moment, Hannah's heart quit beating and I felt her leave. The nurses tried to get her back, they called a code for her and they all tried so hard. After a while of watching them work on her, I told them to stop. I still feel so guilty, what did I do? I just knew Hannah could not take it anymore. So they stopped immediately and gave me my baby.

Hannah went to live with Jesus on April 17th, 2002 at 10:30pm. I picked up Hannah and snuggled her. So after family and friends came to see her, I bathed her, hand printed her, then I carried her from her hospital room outside. I had planned to only carry her to the stretcher but when I started carrying her, I realized that I had never carried my Angel Baby anywhere without tubes and wire, so I carried her outside.

The night was warm and the sky was crystal clear. All the stars were shinning down on us as I laid my Angel Baby on to the stretcher. I covered her up with her blanket, gave her a kiss, a hug and her prayer bear. Then I said a little prayer to her (we always said this prayer but we just changed it a little that night): "Now I lay me down to sleep I pray the Lord my soul to keep. Angels guard me through the night and wake me in Gods' Holy Light". I thanked God for allowing me to hold and love an Angel.

To this day I still struggle with the decision I made. I know in my mind that I did the right thing for Hannah, but I cannot convince my heart. My life is so different now without my precious little girl. I miss my little girl so bad, she was such a wonderful little girl. She is my Butterfly Angel Baby. I feel so empty and alone and some days I hate my life, I don't know what I would do if I did not have her brother Corey and her new sister Tsz-Yan whom we adopted from Hong Kong.

Tsz-Yan has Downs Syndrome, asthma, and a corrected heart defect (AVSD and a PDA). Tsz-Yan is developmentally delayed, about a year behind her age. She is such a blessing to our family. Hannah showed us that we had the ability to love and that we were capable of raising a special needs child. God blessed us with three beautiful children. Our hearts are still broken and we miss Hannah deeply but we are able to love and live because of Hannah and God.

Thank you for being there, Thank you for all your support and Thank you for making my kids smile!!!

Laura
Angel Hannah's Mommy