Savannah's Story
written by mom Shelley

Savannah Faithe was born with a rare brain disorder called Holoprosencephaly (when the brain fails to divide in half). I was told at 24 weeks pregnant that my precious baby girl had this condition which was "incompatible with life" and that we should prepare for the pregnancy to terminate itself or for the infant to die immediately after birth. Miraculously, the pregnancy progressed and at 34 weeks gestation, I delivered my Savannah.

Not only did her brain fail to divide right, it also affected her midline facial features. She had a cleft lip and a cleft palate. So actually it was a whole midline development problem with the face. Sometimes this condition affects other midline areas of the body such as the heart, lungs, kidneys and genitalia, but there was no other midline problem. Thank goodness!! So yes, she had some facial deformities and yes, there were some medical issues, but nothing like I had been told. Savannah was beautiful and cried upon delivery... that was a sound which I will forever remember. She was alive, but for how long, no one could really tell me.

After two weeks Savannah was transferred to our Children's hospital. After a few days, she was given a feeding tube to eat with since her cleft lip and cleft palate, prevented her from eating through her mouth. Then while at the hospital alone one day, the doctor called me into a conference and told me Savannah's condition was terminal and he was not prepared to go any further. He wanted to send her home on hospice to let her die. I was not ready to accept that. She had already fought so hard on her own and though she needed some Oxygen and a feeding tube, I just did not have the feeling that it was her time.

So that doctor removed himself from her case and asked another doctor to take over her care. That very same night, Savannah stopped breathing and had to be put on a ventilator. The nurse and people that were there that night were horrible. They told me that I was making a big mistake, prolonging her suffering and delaying the inevitable. But I was sure that was what I was supposed to be doing... delaying her from dying. I didn't think she was suffering as long as they were giving her a little extra support. Despite the staff, though, the new doctor, who was notorious for taking on special needs children, was confident he could help her.

He then had a tracheotomy done (trach put in her neck to help her breath, since her cleft palate was making it hard for her to breath). He said as she got older and stronger and if we made it that far, a cleft lip/palate surgery could be performed to correct her breathing.

We had already almost lost her twice to nasty lung infections. She was on daily injections into her little thighs because she could not keep the sodium (salts) in her body regulated. She would dehydrate in a matter of hours if we missed a dose or when she got sick. This condition is called Diabetes Insipidus (DI), similar to the more known form of diabetes, except it deals with Sodium rather than sugar.

Savannah's nickname was "Butterfly". It had been since my pregnancy where her movements felt like fluttering from a delicate butterfly. The name stuck and I decorated her room with everything butterfly. Every time I walk by a butterfly it makes me think of Savannah, who had taken time from her journey to stop and smell the flowers and grace us with her presence.

Savannah loved being held and rocked. She was easily entertained by her sister Lyndsey, who danced for her to her Brittney Spears tape. Savannah also loved her brother Lucas, though she cringed at his high pitched squeals of delight every time he went in to see her. We were grateful for the time we had with Savannah.

Savannah passed away peacefully at home with us and all of her butterflies on January 17th, 2001. We were able to hold her in our arms as she left us, spread her wings and flew away. She was without the pain and equipment and in a peace that we can only imagine and dream of. These days, we are reminded of her presence every time a colorful butterfly is around us or we see anything resembling one. I can't help but notice butterflies everywhere we go. Savannah is with me every day of my life and has taught me the beauty of living. She was with me recently as we welcomed her new brothers into the world. Thank you Savannah for seeing me through it.