Last week, I gave you a glimpse into our life with special needs. This week, I want to give you a peek into how we’ve managed our daughter’s health care needs. Before I can do that, though, I should give you just a little bit of the background to her story. At 25 weeks gestation, our daughter was diagnosed with an occipital encephalocele. The name of her birth defect is not really important, unless you yourself have been given the same diagnosis, and then you learn that there is very little information out there. So I mostly tell you the name of her birth defect for the benefit of some other mother who may google it someday, looking for answers.
This particular birth defect has a very high mortality rate–only 10% of the babies diagnosed with this condition in utero survive their first month of life. Of those that do survive, there is a huge range of outcomes, ranging from severe mental and physical handicaps to being completely normal. By God’s grace, our daughter is much closer to the ‘normal’ end of that scale, so far only showing developmental delays in gross and fine motor skills.
In the 3 months between our daughter’s diagnosis and her birth, my husband and I met with many specialists. We quickly realized that we would have to fight for our daughter—we were told many times that ‘terminating’ my pregnancy was the safest, smartest course of action. When we firmly said no, the doctors would start recommending courses of treatment for palliative care—not to provide life-saving care, but instead to make her comfortable until she died. While I will be the first to admit that sometimes palliative care is the right decision, our medical care team would only have very brief conversations about what to do if our daughter was born relatively healthy.
So you can see why my husband and I developed a healthy skepticism for the medical profession in regards to our daughter. Here she was, of all of our children the most in need of wise, skilled doctors, and instead, those doctors were recommending that we take steps to end her life, or at the very least, let it slip quietly away. My husband and I got very good at judging doctors quickly. We could tell, within the first few sentences, whether he or she was really going to help us.
This is the background that informs our approach to our daughter’s health care today.
So what are the biggest lessons we’ve learned? First, we are her parents and know her better than any doctor ever will. We do not have medical degrees, but there is a lot of information available for whose willing to research, and no doctor will ever know the ins and outs of our daughter’s case as well as we do. With this in mind, we must not be afraid to ask questions, or even challenge something a doctor is saying. The responsibility for her care is ultimately in our hands. We make the final call on every decision.
When my daughter was 6 months old, we had a well-respected pediatric neurosurgeon tell us that she needed a shunt put in her brain to drain excess fluid, even though my husband and I did not see any of the symptoms that would have required this dangerous surgery. After several more visits with this same doctor, I finally started making phone calls and got an appointment to see the head of the pediatric neurosurgery department at Columbia University. This man was kind, humble and sympathetic, and gave our daughter a thorough examination. He agreed with our judgment of the situation: she did not need the surgery.
Second, when medical care is necessary, secure the best doctor. We no longer assume that her case is simple, and any doctor can care for her. If we know a friend of a friend who knows a good neurologist, we call and ask for help. We google doctors’ names and read reviews. If we are uncomfortable with anything about a doctor, we don’t hesitate to go find a different one. While this may not be true for everybody, we live in enough of a major metropolitan area that there are always other options out there. If we are unhappy with a doctor, it is worth a two hour drive to another city to get a different opinion.
Third, we have learned that just because a doctor tells us something will be good for our daughter does not mean it will be good for the rest of our family. I must view my daughter’s care in proportion to the needs of my other children. We had a period of 6 months where my daughter was seeing 4 different therapists a week. 4 days a week we had an hour of different therapy: PT, OT, Developmental Intervention, and Speech. This schedule was unsustainable for our family. I was being run ragged. We quit them all, and I have been much happier. And our daughter has not quit progressing; in fact, she continues to gain gross and fine motor skills and speech at about the same rate she was when the therapists were all coming.
We have never considered ourselves proponents of alternative health care. We vaccinate all of our children in accordance with the AAP’s recommendations. I quickly seek antibiotics for ear infections and strep throat. But in regards to our daughter’s current medical needs, we’ve learned that less is really more. We take every bit of advice with a grain of salt, and then research, research, research what approach or other solution might work for us. When a doctor gives a recommendation, we no longer obey blindly.
Our goal is to live a normal life with our daughter. Her siblings provide much therapy for her. They chase her around the couch, help her when she falls, repeat words slowly for her so she can imitate them, get pieces of paper for her to draw on, and hold her hand on the stairs. The care and love she receives in our unprofessional home environment are sufficient for us all right now.
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