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Help for Baby James

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On Monday November 11th,  my sister Grace and her husband Keith went to get a scheduled growth ultrasound for baby James.  When the radiologist went over the scans, he discovered masses in both the left and right ventricles of James' heart known as Fetal Cardiac Rhabdomyomas.  Further examination concluded that these masses were due to a condition known as Tuberous Sclerosis, which can cause masses to grow in other parts of his body and brain.

James was born on 11/22/2019 at UW hospital, a full-term baby, weighing in at 8lbs 6oz. At the time of his birth, his heart rate was over 300 bpm, which is twice the normal heart rate for a baby.  The doctors had difficulty stabilizing his heart, and he was transferred to Seattle Children's Hospital soon after his birth.  Grace only got to see him for about a minute the night he was born, and was not discharged until the next morning to go see him. 

At the time of this writing, James is eight days old and is still in Seattle Children's as the doctors continue to work on permanently stabilizing his heart rate. The position of the masses affect the electrical flow in his heart, causing sporadic and dangerous spikes in his heart rate. A few days after his birth, an MRI discovered lesions on James' brain as well, which will need to be addressed at some point, but the main concern continues to be his heart. He is receiving medication to stabilize heart rate as well as to shrink the tumors, but they are still waiting to see if he is receiving the correct dosage of both medicines.  This condition is rarely discovered in newborn babies, so the information on protocol for this type of situation is slim, and James' cardiologist is working hard to ensure James is as stable as possible before being sent home.  Both of James' parents are spending most of their time down in Seattle with him, which is around 100 miles from their home in Bellingham, WA, and much of their expenses are out of pocket.  James will also need continued medical care, which will not all be covered by insurance.  We anticipate that the expenses for his first year alone to be in excess of $60,000

This is a very difficult situation for Grace and Keith, and it is important that they have enough means to cover James' continuing medical expenses, as well as have the financial means to take the time off to care for him, as it is unknown at this point how long he will remain in the hospital, or how often he will need to go back. We as their family appreciate anyone who takes the time to share this campaign or donates.
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Donations 

  • Anonymous
    • $50 
    • 4 yrs
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Organizer and beneficiary

Christa Lester
Organizer
Bellingham, WA
Grace Green
Beneficiary

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