During the past 12 months this little family has been put through the ringer, and right now they are stretched pretty thin physically and mentally exhausted.
Here's there story.
In March of 2017 Chris and Desirae found out something they had long hoped for.....that they where pregnant with their first child. A normally over joyous time for most couples theirs was over shadowed by the couple being told that their pregnancy was high risk and doctors weren't exactly sure how things would go but to strap in because things weren’t going to be easy. Getting pregnant with out medical intervention for them was something doctors said wouldn't happen.
In September 2012 Desirae underwent neurosurgery to remove a tumor at the base of her brain, causing a rare condition called Cushing’s. The surgery saved her life but had many complications leaving her with half a pituitary resulting in hormone issues and rare condition that requires life long hormone replacement called DI or diabetes insipidus. A condition that affects water and sodium storage in the body. There are not many women who can conceive with diabetes insipidus.
Through out the pregnancy the couple battled issues with bleeding, partial placenta previa, preterm labor, severe edema, hyponatremia, and low blood pressure. Extra monitoring began in the second trimester. These tests where invasive at times, and extra tests required special doctors. During the third trimester a medium size painful lump developed in the middle of Desirae's back next to her spine. She was seen by a orthopedic physician and told it was most likely a lipoma and would probably go away after pregnancy but there was no way to image it with out harming the baby.
At 40 weeks and 3 days the team of doctors made the decison to induce Desirae. Both mom and baby started showing signs of distress. The couple endured 3 long days of labor, and ultimately an emergency cesarean. None of that mattered to them though because they finally got to hold their baby girl Braelyn Mae Dean. During Recovery the couple was told the baby had to be checked out by the nursery doctor and would meet them shortly in Maternal Fetal Care Unit (maternity icu at cedars). When the couple was settled they anxiously awaited their baby to join them but she never came. She developed a respiratory issue and needed help breathing. She was taken directly to NICU. For the next 4 days Baby Braelyn would be in NICU on oxygen support. During this time Desirae endured blood draws every 1-3 hours, and required two blood transfusions. Both mom and Baby fought hard to be reunited and finally where on their last day so they could go home together.
Things at home continued to be rough for this family. Two days after being home the couple rushed their newborn to the NICU on two separate occasions for breathing issues and vomiting. Braelyn spent 15 out of the first 30 days of her life in the NICU. Finally the couple got some answers. Braelyn started seeing a specialist, was put on a special prescribed formula and medication. She is doing well, getting over colic, has gained appropriate weight and hit her milestones, but she will require special monitoring until she is one year old.
The couple didn’t know it yet but they would need to continue to battle some medical hurdles. The baby now stable Desirae saw a spine specialist January 2018 for the lump on her back that had since grown and become more painful after birth. She started having severe pain holding her newborn, and experienced weakness in her legs that cause her to fall while carrying her baby. After seeing the doctor in office the seemingly harmless lump turned into something more complicated and sinister. After 6 painful biopsies a CT and MRI Desirae was scheduled for immediate surgery.
Desirae was diagnosed with a rare tumor of the soft tissue called a Desmoid Tumor. The Tumor was very large, diffuse, and aggressive. It involved her paraspinal muscles (the muscles that stabilize the spine) and trapezius muscle. The tumor was successfully removed with clear margins (meaning large portions of the muscle where excised with the tumor).
We are awaiting final pathology to confirm that the tumor is benign, like the doctors suspect. Because Desmoid tumors have a very high incidence of recurrence, and recurrent tumors have more complications Desirae will have to undergo Chemotherapy Treatment three weeks after surgery.
She will also have to undergo a rigorous physical and occupational therapy program before she can go back to work.
These are already daunting tasks, and they are even more difficult while trying to care for a newborn.
Chris is having to take extra time off of work to care for Desirae and their baby.
This family has endured a lot of adversity, and has incurred a lot of unforeseen extra expenses and stress.
Donations will go towards Assistance with:
Travel to and from Cedar's Sinai for doctors appointments and chemotherapy treatment
Rehabilitation equipment physical therapy
MRI Follow up
Biopsy Follow up
Baby Braelyn's doctors visits, prescribed formula, and medications. And past medical bills incurred during pregnancy.
Any unused portions of donations will be donated to Cedars Sinai NICU.
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