When faced with a diagnosis, your responsibility for your health and your baby while pregnant are to ensure you get the best care possible. Self-advocacy is essential during this time. To what lengths would you go to protect your child?
- With the provider issuing the diagnosis:
- Record for yourself the methodology by which diagnosis was made, and what the indications were (don't rely on MyChart, you want specific test assays and the terminology for the type and methodology of test conducted)
- Ask next steps and if there is follow up to confirm or grade the diagnosis - what is this timeline? What can you do to support healing or resolution in the womb?
- Get a second opinion (with a different provider and even a different hospital system).
- Wait. It is not an emergency if they aren't operating within the hour. Good decisions are not made in an emotionally-charged state.
When you're pregnant, especially after fertility challenges in the past, women often spend their time waiting and worrying for the other shoe to drop, in disbelief that they will finally get the family they've dreamed of, wondered about, and thought maybe it was out of reach. These women approach each week and each test and each visit with their care team as though they're going to get bad news, even as they hope and pray that they may just enjoy their pregnancy.
In the medical industry, it's normal and easy for techs, doctors, and nurses to see things with their equipment, scans, and tests, and discuss what may be wrong (more often than not, not wrong) with your baby. Check out any Birth Trauma or OB Trauma thread and you'll see story after story of empty sac diagnoses, spina bifida or other neural tube defects, dactyly, various syndromes, and deformities who grew up to be perfect, healthy children.
I myself was misdiagnosed during pregnancy, and if I hadn't received a second opinion, my daughter would have been born earlier than when she was ready, and I wouldn't have been able to labor at home naturally and minimize my time at the hospital (I arrived fully dilated in the middle of the night, and was out of there at lunchtime the next day). The stress is needless.
Mrs. W's sweet baby girl was diagnosed with a possible neural tube defect early in her pregnancy. Without a second opinion and the wisdom to wait until the diagnosis could be confirmed, she would have considered ending her pregnancy. Now, with a healthy 7 month old girl, who is perfect, she's angered when she remembers the blasé attitude of the staff when telling her the news of her baby's "condition".
If it's not a misdiagnosis, our culture tells us that babies who may be born with a condition are better off dead. "Inside the eternal love of God there is a place for suffering." I heard it from Brian Buffini, a father of 6 and a terrific business coach. Saints are only made through their work through strife. Real fulfillment only comes through overcoming challenges. Everyone will suffer in this life. We as parents don't get to take on the suffering of our children, it stunts them, learning how to overcome in the face of real obstacles (like caring for a sick child) will teach perseverance, love, empathy, and selflessness, even to ourselves.
I can promise you this: Even if a child has a short life outside of the womb, with you, for 9 months, your child lives without a disability, your child lives connected to their most important person in the world, hears every heartbeat, feels you move, feels your pats and rubs you give your belly (don't believe me? The 5 Ss work because they mimic the time in the womb).
When you receive a diagnosis, I urge you to do the following:
- With the provider issuing the diagnosis:
- Record for yourself the methodology by which diagnosis was made, and what the indications were (don't rely on MyChart, you want specific test assays and the terminology for the type and methodology of test conducted)
- Ask next steps and if there is follow up to confirm or grade the diagnosis - what is this timeline? What can you do to support healing or resolution in the womb?
- Get a second opinion (with a different provider and even a different hospital system).
- Wait. It is not an emergency if they aren't operating within the hour. Good decisions are not made in an emotionally-charged state.
- D&Cs aren't even necessary for miscarriages, though it's often the first suggestion
If you choose to terminate a pregnancy because of a condition, I ask you reconsider trying to become parents in the future. Children come with challenges their whole lives, including injury and invisible conditions. If you're ready to be a parent, you're signing on to raise up children to be good adults, despite the challenges and personal sacrifice. If you're not ready to parent a child with a condition, consider adoption, the baby you cannot care for can be a blessing to another family.
If you are struggling with recurrent miscarriage, or have had children with conditions leading to death shortly after birth, we can help direct you to a healing modality that may end your heartbreak and give you the healthy family you've dreamed of.
Join me in praying today for the women facing a diagnosis. That they may be strong, that their providers be caring, and that the family facing diagnoses be patient in the wisdom of God's elegant design.