Erica and I were expecting our first baby in 2001. It was September and the baby was due in November. We were planning a home birth and had not had a sonogram. We were very excited and looking forward to the birth and new baby. We decided to do a sonogram to see the progress of the baby. During the sonogram the doctors were having difficulty finding something “important”. They couldn’t tell us what it was and sent us to a specialist. We waited around that day and finally got an appointment with Dr. Berry in Austin, TX. He confirmed the information given by the first clinic. Our baby was diagnosed with Hydrocephalus. This is a condition where water is on the brain and there is no way to drain it. The doctor warned us that there was little hope that our baby would be “normal”. She (we found this out too) would probablay not walk, talk, eat, see, hear, or most other functions. He gave us a choice of going out of state and getting an abortion or waiting it out.
Of course, we decided to pray and wait. Upon each visit to the doctor’s office we would discover that the condition had gotten worse. The fluid was increasing and the doctor planned a C-section delivery November 24, 2001. We continued to pray that she would get better and that God would totally heal her. At the delivery, there were over 50 people waiting in the lobby of the hospital. All were there to support and help us on this very important day. What would our baby be like? She was born and we were happy to have her here with us. Later that day the doctors performed an MRI to determine the extent of her condition. The results were crushing. She not only had Hydrocephalus but a much worse condition called Alobar Holoprosencephaly or HPE . With this condition, we were told that she would probably die within 6 months, there was little to no hope of life. The brain had not formed correctly and instead of having two halves (right and left side) she only had a single small section in the front of her head.
The doctor gave us a choice. Do you want to perform a surgery that will drain the fluid and prolong her life or do you want to leave her the way she is? Without hesitation, we had him perform the surgery. She went through the surgery fine and was in ICU for 42 days. We finally took her home 6 weeks after birth. It was a great day to have our baby with us. Over the months and years she has been very difficult to take care of. She doesn’t eat through her mouth, but through a g-tube located in her stomach. She has had numerous hospital stays for illness and surgery. She is unable to sit-up or walk and needs 24 hour care. Here is more info on how her condition affects her.
But there is hope…
Kennady Leigh Steele is her name and she is now 10 years old. She is a very happy girl and loves to be with her friends and family. Her smile effects everyone that comes in contact with it. She knows no enemies or holds no grudges. She loves 4 wheeler rides and laughing with her brothers. If you are new to our church or haven’t spent much time with Kennady, she loves everyone and wants to be close to you.
Check out our ministry based on this experience: www.mademeaningful.com
Robin & Erica, I know the last 10 years have been difficult for the two of you (not to mention your parents) But God is so good!! I myself have ask many times WHY in my life and I’m sure you have, too. There is a reason, even though we don’t always see it. But my hat is off to you both!!! You were young, just married, first child the list goes on and on, but you have triumhped. I rejoice with you everytime you hear a good report about Kennady. I will never forget the dream I had of her after her birth, it is still so vivid in my mind( I shared this with you Robin) I saw Kennady singing in a choir and her face was all lit up , as though she were so happy, and maybe that will be in Heaven and not now, but You and Erica will see that one day!!!! Oh what a day that will be!!! Send more good reports!! I’ll be watching for one. Love you both, Karen
Hi there,Iv been trying to reach you, we are a family from the uk ,and 16 months ago we gave birth to our beautiful daughter Lydia-Joy she to was born with Hydrocephalus ald Alobar holoprosencaphly,How you describe ur situation is exact t to ours we have prayed daily for Lydia we tell her daily she is going to walk,talk and brain is going to be restored in the name of Jesus,Lydia feeds through her mouth,our food blended and drinks bottles,she is always giggling and smiling God has been amazing and we thank him daily,Lydia has 2 brothers and a sister who fuss with her,she loves music and tv xx
Ruth, it was great to speak with you today! We are excited about following your story. Thanks for reaching out across the ‘pond’. God bless you!
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