Can you imagine getting a diagnosis that you baby is not expected to live due to their rare birth defect?
Today’s guest experienced a miscarriage at 8 weeks and then went on to conceive her rainbow baby. At her 20 week ultrasound she received the news no parent doesn’t want to hear that her son Jaleel had a rare birth defect called Lower Urinary Tract Obstruction. LUTO is life-threatening as it damages the unborn baby’s kidneys, bladder, and causes underdeveloped lungs due to low or no amniotic fluid because of blockage in the urinary tract. Tanisha Burke Wormley persevered with her pregnancy after being told her son Jaleel could be stillborn due to his underdeveloped lungs and kidney damage. But God! God saw fit for Jaleel to not only survive delivery, but also a 157 day NICU stay, 2 ER re-admissions, and 11 surgeries.
In this episode Tanisha and I share experiences of having rainbow babies with complex medical needs, how she is managing life pregnant with her rainbow baby girl and a toddler with Stage 5 Chronic Kidney Disease.
This episode is for you to listen to if you are a mother with a child with complex medical needs and wanting to grow your family. This episode is for you to listen to if you have had a miscarriage and/or a NICU experience.
Tanisha’s Bio
I am a Medical Mom of NICU to my 2-year-old son Jaleel, who spent 157 days in NICU, and has Chronic Kidney Disease Stage 5. My son requires around the clock care such as gtube feeding tube, peritoneal dialysis, and tons of medications. As the Creator behind Medical of Moms of NICU, I connect Courageous NICU Moms, Life After NICU Moms, and NICU Moms of Special Needs to share their NICU story, resources, and advice to help them navigate the medical system with ease!
Tell me about your journey to motherhood? What obstacles have you overcome?
I had a miscarriage at 8 weeks before I had my son Jaleel. I didn’t even realize I had a miscarriage until my OBGYN couldn’t find a sac or fetus on ultrasound. Jaleel was a rainbow baby that was not expected to live because he had a rare birth defect called Lower Urinary Tract Obstruction in utero at 20 wks. LUTO is life-threatening as it damages the unborn baby’s kidneys, bladder, and causes underdeveloped lungs due to low or no amniotic fluid because of blockage in the urinary tract. Jaleel was predicted to be a stillborn or not live too long outside the womb due to his kidney damage and severely underdeveloped lungs. However, God saw differently, and Jaleel has overcome 157 days in NICU, 2 ER re-admissions, and 11 surgeries. My son now is looking for a healthy living kidney donor to start the kidney transplant process. After Jaleel, I had two recurring miscarriages all in the first trimester. One was a missed miscarriage which I never knew existed. The other miscarriage was natural without taking a pill. I was devastated, but my Godsis told me to stop taking pregnancy tests after a missed period and let God show me through my body I am pregnant. Today, I rejoice as I am 20 weeks pregnant with a healthy and happy rainbow baby girl expected in October 2020.
Any books, tools, resources that have helped you on this journey that you want to share with the audience?
Sisters in Loss, The Art of Overcoming with Aiyana Ma’at, The Bible, and Iyanla Vanzant
Become a Sisters in Loss Birth and Bereavement Doula Here
Living Water Doula Services
Book Recommendations and Links Below
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Join the Sisters in Loss Online Community
