I want to start with a quote, that might sound familiar to you.
"Perfect love drives out fear."
If you've never heard this before, you can read the entire passage in the book of 1 John, 4:18.
Prenatal Partners for Life is a support organization for families facing adverse diagnosis during pregnancy and for families of children with special needs. In the leadership of this organization is so much faith. So much compassion. I can't even begin to tell you how much comfort and reassurance the founder, Mary Kellet, provided for me in our limited conversations during and after Siena's birth. Meeting her in person, she was every bit as warm and welcoming. While amazing at the time, this fact became even more amazing to me as I realized just how far her love has reached. Just how far her faith has brought the organization and the people that they serve.
Prenatal Partners for Life understands that facing a devastating diagnosis is scary. But I get the overwhelming impression that they see their role (intentionally or not) as providing support for families so they do not have to be afraid. Between emotional and financial support, information, connections between families, and more...they make taking the next step, a step done in faith rather than fear.
Yet, among the tables at the banquet. In the hushed conversations, there was an undercurrent that was I believe to be very rooted in fear. In the hushed conversations, there were whisperings of things like "Don't ever get a (prenatal test xyz). If your diagnosis is confirmed they don't have to treat your baby. " Even, "You can get a new doctor and you don't have to tell them. Then they won't hesitate to treat your child."
I want to tell you the truth about those sorts of fear-based statements.
They will not save your child.
I'm not going to argue for, or against, any specific prenatal testing. I'm not even going to argue that in normal situations, routine "screening" prenatal testing causes a great amount of undue worry and heartache with false positives and other negative results. It is no doubt that many women undergo abortions due to the results of these testing, some of which are undoubtedly false positives.
That's the cold hard truth.
The cold hard truth is that sometimes babies die.
The cold hard truth is that a lot of doctors, particularly obstetrical and perinatologists, believe that they would be doing a favor to parents to save them the heartache of this truth. Since society will not accept their child unconditionally, it would be easier for everyone if they didn't either.
Yet knowing the truth, we can act smart instead of out of fear.
With information we can advocate for our child's life OR our child's death on God's terms. Imagine your child has a treatable condition, but the doctor you have chosen to deliver doesn't have the support to handle that issue. If you live in a large urban area that will probably still be ok as there will hopefully not be too much delay in getting your child to the right doctor. If you don't live in a large area, however, the delay might in fact be greater than your child can overcome. Even if you have capable doctors, if you withhold specific information they might waste precious time treating the wrong condition.
Yes, some doctors will use the information gained from your diagnosis to encourage you to have an abortion. Some will try again and again even if you make your objections clear. Trust me, I have been there.
And being there, I learned a lot about the importance of keeping your head on and thinking straight no matter how scary it gets. Sometimes you do have to cut tail and find a new doctor, but with good information you will know what kind of doctor you might need. One that has access to the resources your child needs. When we switched doctors, for example, we did consider going to a different hospital. They still had a high level NICU, BUT they did NOT have any pediatric nephrologists on staff. If I had gone with the "maybe, maybe not" diagnosis of the ultrasounds I might have been tempted to risk it.
We knew, however from that miserable MRI, that even IF they were there they were seriously deformed. Delivering at a hospital that wasn't equipped to deal with kidney issues themselves could have been a serious mistake. Instead, we delivered at a hospital that knew what they knew and had an upfront plan to deal with kidney issues even during those initial moments. The kidneys were not immediately pressing, of course, but a certain type of hydration, IV, and nutritional support from the beginning could have increased the time we had to come up with a kidney plan before they became pressing.
Facts.
Facts save lives.
Fear does not.
Here are some more facts. No matter what your doctor believes they should do to treat your child or not treat your child, you are still the parent. There might be situations when you may want to not treat a certain situation and situations were you want to try when they advise you not to. But they still need your permission. Another truth is that most of the horror stories I have heard from families involve the pregnancy providers, not the pediatric ones.
Yes, of course there are exceptions, but that is why you need facts not fear. You can't be afraid to trust your child's healthcare providers. To fire them if needed, yes, but to be able to communicate with them at the same time. They might not understand you parenting style, religious beliefs, or anything else about you but they know the medicine and you do not. You can google until the cows come home and you will still not have a medical degree. By all means, get second opinions even from other parents who have been there, but make sure it's coming from people who have been there not just the latest article your well-intentioned BFF read in Parents magazine. Because at the end of the day you need to have a relationship with your child's doctors. You need to know that when they tell you there is nothing left to try, that there is nothing left to try. I'm not telling you this for their benefit, but for yours.
I didn't have to opportunity to be very involved in Siena's care in those first moments of her life. I could spend days (and admit that sometimes I have) second guessing their decisions and ours. Maybe if they had done this...or that...or something else.
But that is fear talking.
Fear that says my decisions and their's were the only thing responsible for Siena's life and death. I've realized something about that fear.
That fear puts God in a box in which He simply does not belong. It is only human arrogance that believes that God's miracles are reserved for those who make the perfect set of decisions. That He needs us to act. Participate sometimes, sure.
The truth is, however, that sometimes all the right decisions are made and a baby dies.
Sometimes all the wrong decisions are made and a baby lives.
It is so much bigger than human intervention.
So, yes, having an adverse prenatal diagnosis is scary. It's no doubt the most terrifying thing I have ever been through in my entire life.
But being scary, doesn't mean you have to be afraid.
Get facts.
Make decisions based on faith.
Not fear.
Get God out of that box that fear puts Him in.
God is perfect love.
And perfect love drives out fear.
2 comments:
Thank you Heidi.
Beautiful.
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