Finding What was Right for Nathan
This is a guest post by Marcela De Vivo, a health writer for NorthWest.
When I was 35 weeks pregnant with my first child, I was sent by my OB for an ultrasound with a Perinatologist. Our OB never said why, just that he had made an appointment for us and we should go see him the following day. The perinatologist spent about 30 minutes doing an ultrasound without speaking a word. After he was done, he asked us to go to his office to discuss his findings. The moment I walked into his office and saw a box of kleenex in front of my chair, I knew the news would be bad.
“Your son has holoprosencephaly. You can Google it for more information. He will not survive birth. I’m just sorry this wasn’t discussed earlier so you could’ve aborted sooner. I’ll schedule a delivery now you can get past this, and move on with your life.”
We left his office in shock. But something felt terribly wrong. The doctor was certain about my son’s defect. But how could he be so certain about the outcome? Why was he so intent on delivering him early, to lessen his chances of survival?
Hence began a lifelong journey, where I’ve learned to question people in the medical field and ultimately, to trust my own judgement and intuition.
Even if the doctor was quoting statistically relevant information, I believed in the power of prayer and spirit, and I wanted to give my child every chance of survival. I disagreed with the doctor, scheduled a C-section on his due date, and welcomed him alive and strong into this world.
My son is now almost 7 years old, and has led a very fulfilling life. Even though the doctor was right and my son DOES have a severe brain malformation, I’ve discovered that I have to play an integral role in my son’s medical care, sometimes declining a doctor’s recommended treatment, and ultimately trusting myself and my views.
Going Against Medical Advice (AMA)
On the occasions when we’ve decided to go against medical advice, it’s often been because of a sense that Nathan’s doctors weren’t seeing the whole picture, and that they were missing both factual and intangible aspects of Nathan’s life that can only be picked up from living with him. As this started happening more often, it became apparent to us that doctors don’t like being told that they’re wrong, much less getting a second opinion directly from a patient or their family members.
What we had to do was measure what our doctor said with what we knew to be true about our son’s body and physical condition. While we didn’t want to completely disregard our doctor’s suggestions, we also didn’t want to shut our minds down and ignore the things we knew about Nathan that a doctor couldn’t (or wouldn’t) take into consideration.
In that moment, we had to be prepared to dialogue with our doctor about the variables he wasn’t considering, and then make a decision based on what we thought was best for Nathan.
Home Remedies and Prescription Drugs
Another problem we encountered was the barrage of recommended prescription drugs that doctors tried to prescribe for Nathan. With so many of these drugs having side effects, some severe enough to even warrant the use of more drugs, we believed that they were more of a problem than a solution.
It was a tough call to make, because every other child with cerebral palsy was on a heavy regimen of prescription medication, and saying no to something that seemed to be so conventional did feel a bit risky.
Yet, all things considered, our son is in remarkably good health considering his condition, and now almost seven years old, he’s lived longer than any doctor ever thought he would. While doctors think it’s quite strange that I have him on almost no prescribed medication, they can’t explain the fact that he’s lived much longer than he should have.
What we’ve done instead is use homeopathic and herbal remedies to keep him in good health, and they’ve worked well!
We’ve learned that, regardless of the situation, it’s vitally important that parents be well-informed and involved in their child’s medical care. It’s not that you need to be in constant conflict with your doctor, but you do need to balance what they say with what you know to be true about your child’s situation.
Our research was completely ahead of time, thus we were able to go to the doctor’s office armed with knowledge and common sense. We’d encourage you to do so as well, and if your gut tells you something isn’t right for your child, follow your instincts!
Marcela De Vivo is a health writer for Northwest, a mother of a special needs child and hard-working business owner. Through her writing, she is able to educate other parents with special needs children about their options. Follow her journey with her son by visiting www.PrayForNathan.org.