My EXTRA Reminder
If you’re feeling relieved that your genetic testing came back with little to no chance your baby will have any chromosome abnormalities, you can and should celebrate. Your baby will not face all the challenges my baby does. I am super happy for you. I will celebrate your baby with you. I would celebrate the same had your testing come back positive for a chromosome addition or subtraction. I would celebrate with you and your baby no matter the circumstances. All life is a gift.
I remember the day I walked into the doctors offices to have all my testing and answer all the questions. I was all smiles. Nothing could wipe the smile off my face. I was 41 and pregnant against all odds and completely shocked in the best way. The lady handed me a book of all the things that could go wrong at my age being pregnant; nope, not me. I had already had two beautiful babies and with no complications or any questions about their health. Do you smoke? No. Do you drink? Not really. Do you have family with inherited genetic abnormalities? Not that I know of. And so on. Then came the age part and what all could be or go wrong. I still smiled and answered confidently. No worries.
She said that I answered everything she needed and sent me back to wait for my scan. The scan is where they were able to be see “soft markers” of potential “issues”. The room went from big laughter and excitement for me to dark and cold… they seemed as if this news was the worst thing they could say, like stage 4 colon cancer. Yes, I cried. I cried for the fear of never holding my baby. The delivery was as if I would never get the life I dreamed of with my baby. What they didn’t tell me is that his “extra” isn’t scary, but wonderful. That he would be strong and fight for his life each step of the way. And if I was lucky enough to carry him to full term, he would be a blessing to so many. So the sadness in the delivery of this news was wrong, it robbed me of the joy of my day seeing him in my belly and discovering the beautiful that was to come for my family.
So back to the start of my story. It’s okay to pray for a healthy baby. Its okay to celebrate the life you’ve been blessed with. Its not okay to imply that you had God show up for you and I didn’t. He showed up for me in many perfect ways. He showed up and gave me and my family the LIFE of Hudson. His smile, His giggle. His light. His determination.
You can go through life praying for many miracles and many things in your life. God answers prayers, I believe that wholeheartedly. But GODS WILL is greater than my worry or any fears. What He provides is a perfect plan and Hudson’s “extra” was all part of it. We can’t as a community devalue ones life to say your gift was better.
Children are a gift. Not some children, but ALL children. No comparison is necessary. When we publicly put our opinion on Gods will, it’s often viewed though a narrow scope of a few. The broad way to see this is that God has shown/shows up for everyone. He gives us what we can handle, even when we don’t think we can. Not all disabilities can be detected on genetic screening or monitoring. Our babies are loved and worthy with or without any seen or unseen “abnormalities”. Definition of abnormal: deviating from what is normal or usual, typically in a way that is undesirable or worrying. See, it is this language that puts doubt in hearts. Do I worry? Yes, of course, but not how you think. I worry about acceptance most. How the world will treat my child. He has already done so many wonderful things in life and still people will approach me as if my life is harder. It’s not. Don’t ever feel sorry for me. Hudson provides us all with strength and determination to make this world better for him. While we have accomplished a lot, we still have mountains to move.
Today, I learned that one mountain was moved that I have myself joined in the climb. The American Academy of Pediatrics (AAP) has finally issued updates to their guidelines that are way overdue.
From Live Action News about these updates:
The way parents receive a Down syndrome diagnosis will hopefully be changing after years of advocacy. The American Academy of Pediatrics (AAP) is updating their guidelines on how medical professionals deliver a diagnosis, something that could be potentially life-saving.
The Down Syndrome Diagnosis Network (DSDN) originally launched on World Down Syndrome Day in 2014, with the goal of helping to support families after receiving a Down syndrome diagnosis, both prenatally and after birth. The other part of their mission was to improve how the medical community delivers a diagnosis, with an emphasis on accurate, up-to-date information. DSDN also promoted nationally recognized guidelines on how to deliver a diagnosis properly, a physician feedback program, and resources for medical professionals.
Another DSDN campaign featured letters written by parents to the doctors who delivered their diagnoses; while a small number were positive, the majority were negative. One mother said doctors referred to her baby as “it”; another woman’s doctor said her daughter would be a ‘vegetable’.
Part of the DSDN mission has included medical outreach, which again, has involved negative experiences. Heather Bradley, a member of the Board of Directors and former president of DSDN, spoke about what was said during an American College of Obstetricians and Gynecologists District meeting in Wisconsin.
“In speaking with a Maternal-Fetal Medicine specialist from Minnesota, he said that delivering a Down syndrome diagnosis was like giving someone a ‘crap sandwich,’” she wrote on Facebook. “When a new or expectant parent is just told the news their baby has Down syndrome and the first words are ‘I’m so sorry’ or ‘When should I schedule the termination?’, what is that physician saying about their CHILD? It most definitely tells them that their child IS a ‘crap sandwich.’”
One survey found that just 11% of women reported having a positive prenatal diagnosis experience, while another survey found that 13% of doctors admitted purposely overemphasizing the negative aspects of Down syndrome in an effort to pressure parents into abortion.
But the years of hard work and advocacy is slowly paying off. The AAP’s new clinical report includes updated guidelines on how physicians should deliver a diagnosis. Families are to be congratulated (no more apologizing for a child’s existence), to refer to the baby by name, and to make sure a support person is there for the parents during the discussion.
Physicians are also told to leave out their own personal biases, to use up-to-date and accurate information, to use person-first language, and to connect parents to local support groups and resources. Doctors are also told to emphasize the positive aspects of Down syndrome, including improved medical outcomes and the fact that people with Down syndrome and their families overwhelmingly report being happy with themselves and their lives.
When it comes to prenatal diagnoses, doctors are to include prenatal care considerations, and to take a “non-directive” approach to discussing options; in other words, no more assuming the parents want an abortion, making appointments without their permission first, or pressuring them into abortions.
“For [EIGHT] YEARS we have been working with health care professionals to improve the diagnosis experience for families. We were steadfast in sharing the stories of our DSDN families with medical professionals, so they knew what the current realities were and to ask them to embrace and advocate for using an accurate, up-to-date, unbiased approach to sharing the news of a Down syndrome diagnosis. We specifically asked for prenatal medical care guidelines for a Down syndrome pregnancy, and to connect families to national and local support organizations as soon as possible,” DSDN Founding Director of Medical Outreach, Jenny Di Benedetto, said in a statement, adding, “We made a real and tangible change in the way a Down syndrome diagnosis is going to be delivered. Us. This group of moms who never gave up. For [EIGHT] YEARS we advocated and this week, when we were least expecting it, the medical community showed us that they listened. They heard us, they agreed with us, and they are advocating alongside us."
AMEN! This change will be LIFESAVING! Simple. Needed. CONGRATULATIONS!!!!
You see, this fight to recognize life, in all forms, is worth celebrating. No labels on our children are necessary. Hudson is a toddler boy. He plays. He learns. He lights up the room. Down syndrome is an “extra” he was born with. It will not go away. And I am celebrating every day who he is and who he will become. My EXTRA reminder is to say that God stepped up for me, too.