Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter’s life. Her family is trying to raise money to cover the costs of their infant’s precarious medical situation and appreciating each day they have with their little fighter. If her little girl had words yet, this is the story she would tell:
“Mommy and my siblings have Ehlers Danlos Syndrome Classical Type, Von Willebrand Disease and Delta platelet pool deficiency. Due to these things mommy’s body couldn’t handle pregnancy and it forced me and my sisters to be born early. My sister Ruby was born at 35 weeks and my sister Alyce was born at 29 weeks.
Mommy’s obgyn started her on the mkenna shot early at 15 weeks hoping to keep me in as long as possible. We were so worried I would come sooner than 29 weeks. And it worked I stayed put till 33 weeks!! But unfortunately mommy started having painful contractions on October 18th 2016 that were only 2 minutes apart (uh-oh) she went to the hospital and nothing they did could get them to stop. Mommy’s ob came in and told mommy she would have to go by ambulance to the big hospital in Lansing MI because the one she was in couldn’t handle a baby as early as me.
While in the ambulance mommy’s water broke. Upon arrival to Sparrow Hospital the doctor’s told mommy that seeing as her water broke they were going to encourage labor instead of trying to prevent it to try and create as little stress on me as possible. Mommy was in labor for 2 days!! She finally gave birth to me on October 20th 2016 and it took me 2 whole minutes to start crying (mommy was scared). She says I am the most beautiful baby she has ever seen. I was 4 pounds 7 ounces (2000 grams exactly!) and 18 inches long. The doctors said I was doing well. Then the unthinkable happened.
Mommy had tube removal surgery an hour after I was born and it released an infection from her uterus into her abdominal cavity. That same infection is what caused me to be born early and it attacked my brain. My brain swelled up like a tiny watermelon within 12 hours of my birth. It pushed my growth plates causing them to overlap and now the doctors believe I have brain damage but want to wait till I’m 5 pounds to do the MRI. All of the IVs they have given me have blown my veins so I have lots of bruising and they are afraid the contrast for the MRI will cause more harm than good at this point.
I have severe reflux which has caused apnea that has stopped my heart 6 times when I’m eating or within an hour after and when I’m sleeping my apnea drops my heart rate extremely low (in the 30-40s).
They did an echocardiagram of my heart (my mommy and sister have an open pfo and mitral valve prolapse and my other 2 siblings have pulmonary valve stenosis) which confirmed I have an open pfo that must be watched. So far I passed my hearing screening but it needs to be repeated (my mommy and 2 out of 3 siblings have hearing loss due to the EDS and wear hearing aids) to make sure I won’t need intervention. I am now up to 4 pounds 7.7 ounces and it is just a waiting game until I am big enough for their other tests.”
