Heather's Story

Heather Joy was born 4 days past her due date, on January 18, 2001. She was 6 lbs. 15 1/2 oz. at birth. After giving birth to 6 children since 1993, this seemed like my healthiest pregnancy yet. The labor was painless until the end. She popped out so fast that she was bruised over her entire face and most of the right side of her body. Still, other than needing a couple of weeks under the Wallaby lights for jaundice she seemed to be a perfectly normal baby.

After about 4 months, the doctor noticed that she wasn't smiling. I asked her if maybe it was caused by the white thing I noticed in her eye. The doctor prescribed a visit to an ophthalmologist and a neurologist. We were finally able to get an appointment with the ophthalmologist one Friday morning when she was about 5 1/2 months old. He said she had a "dense central and posterior subcapsular cataract in the right eye of approximately 4-5 mm" and a smaller one in her left eye. He ordered surgery to remove the right cataract 8:00 am on Monday. The appointment was over by 11:30 and I told him we had an appointment at 1:00 at DuPont Children's Hospital in Wilmington, DE with a neurologist because of some apparent developmental delays. (We would normally go to Children's Hospital of Philadelphia, but they were booked until 2002.) The ophthalmologist said he would contact the neurologist to make sure everything would be okay for surgery. At the neurologist's office in DuPont, the doctor came in to see Heather. After checking out her floppiness, he picked her up and spun her around. Her eyes didn't try to "catch up" with the spin. He didn't really have the right equipment to check her eyes, and admitted not having much knowledge of the development of the eyes in infants. I was really confused when he started flashing the lights on and off until he asked me "Just when did she see the ophthalmologist anyway?" It then occurred to me "Oh, eye drops." When he heard about the scheduled eye surgery, he ordered a CT scan then and there. Heather was very cooperative, and didn't need to be sedated. The doctor came back into the office about 20 minutes later with a large envelope and said he wanted me to see this. "I wasn't expecting this and I'm sure you weren't expecting this, but after talking to the x-ray technicians we have to tell you that it seems that Heather only has about 10% of her brain." Okay. What!? So he took out the x-rays and proceeded to show me all of the brain destruction. "This may have been caused by Rubella," (I was immunized as a child) "or Toxemia," (but Mike changes the litter box) "or even by ...." (but it was my healthiest pregnancy yet!) He proceeded to give me the bleakest prognosis any parent would want to hear while alone in another state with their (now) "damaged" baby. "The baby may live 20-30 years or much less." (Isn't that true of most people?) "The baby will probably have seizures." (She hasn't had any yet that we know of.) "She will be completely dependent on you to dress and change her; she won't be able to feed herself." (Good thing I love newborns!) And this was my otherwise perfect baby who all of a sudden was being turned into some life-sucking demon by the tactless presentation of a clinically minded neurologist. At this point I made a mistake. I asked Dr. Doom-and-Gloom, "Well, where do I go from here?" His advice was, "I don't know. That's up to you. While I don't believe in benign neglect, I really don't know if going the extra mile is warranted. I've seen babies with the feeding tubes and lying on the stretchers. I've had moms tell me 'Oh, my daughter likes the new medicine you've prescribed much better,' but I don't see how it makes that much difference. They can't really think or feel. How could they have a preference?" I felt my stoic self start to crumble at this point and just wanted to leave. I asked him for a written report of his work up. He asked if I wanted to call my husband and give him the information. (Over the phone!?!) He then called the ophthalmologist and after some discussion they decided that "in the absence of the occipital cortex...we would defer intervention at this time." No eye surgery, they decided. After this we had a second opinion done at CHOP. (Now that we had a real problem, we were able to get in for an appointment in only one month instead of five.) This neurologist looked at the films and confirmed the facts of the matter. However, he was much more open and optimistic. He didn't recommend an MRI because it wouldn't tell us much more than the CT scan, and required sedating the baby. He explained that they would rather wait until she is older. I asked about a functional MRI to see if they could track through brain activity if parts of Heather's brain may be taking over certain functions such as sight. He said, "I know what you're asking. But we have no crystal ball. We can't tell how far she may develop by looking at a brain scan. Get her started with early intervention, and they will give you the best help with Heather's development." At that point I changed from DuPont to CHOP as the place of choice to take Heather for neurologist visits. Since the time we first found out until now (8/2001), Heather has had TORCH titers: they found no signs of infection in her blood that may have caused her problem. She has had a hearing test: her hearing is great! She has had an EEG looking for seizure activity: none detected. She has been very healthy, aside from being a little snuffly (I attribute this to teething--although we all know that teething has nothing to do with sniffles, fevers, grouchiness, or drooling.) We could tell the DuPont doctor didn't know everything because we notice that Heather has a very bad temper, and is able to communicate non-verbally even at 7 months when she has a problem or a need. She startles a lot, but that isn't surprising in a household jumping with little kids. To anyone looking on the outside, she looks perfectly formed. We thank God for keeping her healthy thus far. August 21, 2001 was her first IFSP and she will be seeing a Physical Therapist once a week and a Vision Therapist once every two weeks to begin. We can change as we go along--whatever it takes for her to reach her "maximum potential". Heather's problems may seem huge, but we know God is in control of everything. There is always a reason for what happens, when it happens, to whom it happens, etc. God has chosen to give Heather to us in a body that has physical limitations. Our responsibility is to do for her what we are able and leave the rest to God. As we perform our tasks day to day, we are promised that God will give us the strength to see it through. No matter what, we must remember to "give thanks in everything."

Thank you for your prayers and support.
Karen and Mike Krueger and Family
(William (8), Laura (6), Eric (5), Peter (4), David (2) and Heather (7 months)

Heather died on March 2, 2007 after a very brave fight with cancer.