Hannah at Christmas

Hannah was born on May 20, 1998.  In the final weeks of what had otherwise been a normal pregnancy, I noticed a change in fetal activity.  My physician ordered non-stress tests twice a week until I delivered as a precaution. The tests were all reactive, much to our relief until the 39th week.  That particular day, the test was considered to be "non-reactive" and many of the fears that I had had throughout my pregnancy seemed to be becoming our reality.  Since the heart rate and other vitals were OK, my physician decided that given the fact that we were so close to my due date he would induce labor the following morning.

The induction was successful and Hannah Grace was born at 11:15 a.m. on May 20, 1998.  She was not able to clear her airway after delivery and needed some assistance to breath.  With a little encouragement, she started to breath on her own and was taken to the nursery where they could provide oxygen for her.  My physician returned a few mintues later to report that she was breathing very well and was maintaining good levels of oxygenation. With my permission, he wanted to start an IV for fluids, again as a precaution, fearing that the exertion of nursing may be too much for her. In starting the IV, they discovered she had a cleft palate.  Since her cleft involved the hard and soft palate, but not her lip, it was not immediately obvious.  More phone calls and he found us a doctor that he believed was the "go to guy" for clefts.  This physician, at Minneapolis Children's requested immediate transfer and  she was then taken by helicopter to the NICU.

Our stay there brought us news that would change our lives forever.  During her 8 day stay, we learned that Hannah had a chromosome disorder.  The particular disorder she has, Ring 18, is rare and many of her physicians had not actually treated another patient with this syndrome and very little is known about it.  Lucky for us, both the cleft specialist and the neonatologist we were working with took that to mean that until Hannah proved that she could not do something, we had to assume that she could and therefore all necessary treatment would be provided for her.  A battery of tests were done to check the function of her major organ systems and they all seemed fine.  It did not take long though for us to encounter physicians that had a very different outlook on the best course for Hannah.

On the very day that we were planning to take her home, an eye doctor came in to do an exam and while giving instructions to the nurse that was assisting him, he commented on what a waste of time this was as "this kid's not ever leaving here alive".  Unfortunately, we've encountered several physicians with this same attitude about her care.  The good news is that our family physician, the neonatologist and the cleft specialist were on our side and helped us to put together a network of doctors that were not only willing to work with us, but are outstanding in their respective fields.

One of my greatest moments occurred when I took Hannah for a check-up with her cleft doctor.  He had a medical student working with him that day. Before entering the room I heard him tell the student that this next patient was a very special little girl.  When they came in the room, Hannah smiled, he has always been one of her favorite people.  The doctor then turned to the student and said:  "My colleagues told me not to waste my time on her, she wouldn't amount to a hill of beans.  Now, isn't that the prettiest hill of beans you've ever seen?  Don't ever let a child's future hinge on a single test.  You don't know what you could be missing."

Today, Hannah is 7 years old and continuing to make progress everyday.  Her cleft palate has been repaired, a problem with her feet corrected and she has undergone 11 other surgeries for various reasons, most of them minor and related to ear problems resulting from the cleft.  Our child who "would never to anything but lay there" is walking independently.  She is learning more everyday and is doing very well in school, communicating through assistive devices such as switches.  She knows what she likes and does not, she knows people and she has quite a personality!! She does require assistance to complete many of her daily cares, but she does participate and she is a joy to be around. She is a very determined little girl and it shows as she never gives up on her therapy, working hard every time.  We could have listened to those doctors that told us to leave her alone and let her die but we chose not to.  Instead, we surrounded ourselves with professionals with the same goals for her that we have, people who are willing to fight for her and I would never give that up.  Further, we have learned a lot about life through her eyes.  We have learned to be thankful for the little things in life and we find a lot more joy in all of our children's developmental milestones because we know that each one is a blessing and not something to be taken for granted.  We are truly blessed to have Hannah in our lives!

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.