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Morgan

Morgan

Female / 3 years

Share the first part of Morgan's story for readers on Sleuth! When and why did you start to feel concerned?

After my 20 week anatomy scan I went to a specialist in high risk pregnancies. I was tested for CMV after my daughter had an echogenic bowel. I told that CMV was nothing to worry about after my blood test cane back as a primary infection. The high risk doctor said my daughter would be just fine and I was referred back to my primary doctor who said the same thing, not knowing any different. Due to my health problems during pregnancy, such as blood clots in my lungs and having Ehlers-Danlos Syndrome, along with my daughter failing a non-stress test very early on, I believe around 25 weeks, my doctor referred my care to a different high risk clinic. At that time, I was very worried. After my first appointment they had a emergency NICU care plan set up so the NICU nurses would be in the room when my daughter was born to do assessments and take her to the NICU of needed.| After my doctor had set up the NICU team with me, I had a NICU tour at 30 weeks. The same day I had an appointment with a team of doctors to explain what to expect for my daughter- they didn’t give a very positive outcome. I had appointments with my doctor, ultrasounds, and multiple non-stress tests weekly from 30-39 weeks and I was worried every time I went in that there would be something wrong and I would be having her that day. I, was told due to her echogenic bowel, my blood clots, and her IUGR., that it would be possible Thankfully I was able to deliver her full term at 39 weeks. As soon as she was born she had lab draws, urine samples, an ultrasound of her head to check for CMV damage, and an ultrasound of her spine since she had a birthmark that is common for spinal cord abnormalities. The ultrasound of her brain came back with cysts, calcification, missing white matter, and a hemorrhage. The spinal ultrasound came back clear. They later confirmed the ultrasound findings of her brain with an MRI. The next day she had her newborn hearing tests and failed it after they did it 3 times before she was discharged at 3 days old. She had to start seeing specialists out-patient right after she was discharged from the hosptial to be able to keep her out of the NICU and come home with me. From the time she was born she has seen many specialists, Morgan has been in and out of the hospital often, and has progressively had more diagnosis added. It can be very stressful at times. I wouldn’t say it has gotten easier, it has just become our new normal in life. It isn’t a shock every-time she has a new diagnosis, gets sick, or her care team adds a new specialist.

Xam

Xam

Male / 3 years & 6 months

Share the first part of Xam's story for readers on Sleuth! When and why did you start to feel concerned?

My pregnancy was fairly typical until my 20 week anatomy scan when they found I had placenta previa and Max had an echogenic bowel so I was referred to an maternal-fetal medicine doctor (MFM) for further testing and monitoring. The placenta previa corrected itself but the MFM doctor did a TORCH panel which did show that I had CMV antibodies so both the MFM and my OBGYN said I had already had CMV (most likely as a child) and everything was fine. Max was born in March 2018. He was 6lbs and 14oz with the sweetest little face. Max was also covered in a petechia rash on his face, shoulders, chest and back. I asked everyone from his OB to the pediatricians to the nurses about it and they all said it was from the traumatic birth, except his birth wasn’t traumatic at all- it was easy. Especially compared to his older brothers birth. Everything was fine until his one month appointment when I was told his head circumference had fallen off the growth chart. I was still told not to worry but Something inside me kept saying something wasn’t right Fast forward 4 months- we had been in and out of the pediatrician for constant feeding issues, extreme crying and tightness/rigidness in all 4 of Max’s limbs. Pediatrician continuously chalked it up to severe reflux as multiple people in our family have it as well- including Max’s big brother. We were referred to a GI who told us he didn’t think it was reflux but to keep his head circumference on our radar as it still hovered anywhere from the 1st-3rd percentile just depending.

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