Lillian's Fight with CHD

On July 3rd, 2017, Alan and Brigette found out they were going to become parents. While they both knew this would be life changing, they were overjoyed to know they would be sharing this beautiful experience together.

October 20th, after the anatomy scan, the couple were so happy to find out they were going to be bringing a baby girl into the world, just as they had wanted…

However, after the anatomy scan appointment they were devastated to learn they were being referred to a high risk pregnancy clinic, because the doctors believed something could be wrong with baby’s heart…

October 31st, Alan and Brigette went in for an echocardiogram (an ultrasound of the heart), and were told their sweet baby girl Lillian May, was diagnosed with critical Aortic Valve Stenosis with Mitral Valve Regurgitation, resulting in a dilated left atrium. To give a bit of background, Aortic Stenosis is the narrowing of the Aortic Valve, which restricts blood flow from the Left Ventricle into the Aorta, that's job is to supply the rest of the body with oxygenated blood. This meant Brigette would need to see specialized doctors and cardiologists often to monitor Lilly’s heart. For most of the pregnancy, doctors believed they would be able to perform what’s called a “balloon valvuloplasty”, where they take a catheter, insert it into an artery, travel up to the heart, and attempt to dilate the Aortic Valve to increase blood flow.

At their last cardiac ultrasound, they were advised that Lillian’s Aortic Valve was a half millimeter too small and a ballooning wouldn’t be beneficial for her. The doctor informed them, the only option would be to have open heart surgery called the “Norwood” procedure, when Lilly would be around 7 days old. Not only was this high risk, due to her being little and young, but it is the most complex heart surgery out there. The Norwood is considered the first stage of three stage surgeries, which would ultimately make her heart into a “single ventricle” heart.

The original plan for Alan & Brigette was to have a cesarean section, performed at Legacy Emanuel on March 2nd and then Lillian would be transferred to Randall’s Children’s Hospital to have her ballooning done. While they have an amazing staff and surgeon at Randall’s, they only perform about 3 of these surgeries per year and the survival rate is 83%. After learning this, they began to seek second opinions elsewhere, including Seattle Children’s Hospital, which is ranked #15 in the US for pediatric cardiology (Randall’s isn’t ranked currently), and is considered the best in the Northwest. They perform this surgery roughly 18-20 times per year, with a survival rate of 94.4%. Currently, the doctors are working with Brigette’s insurance company, trying to get all of this approved, so that Lillian can have a better chance at life and be delivered and have surgery in Seattle. If they are able to go to Seattle, the couple is looking to stay at Ronald McDonald House, known for helping families stay near their children receiving care, for free/recommended donations. The RM house in Seattle is usually full. The couple is potentially facing using their resources to pay for other arrangements. All the while, Alan will be using the little vacation/sick time he has (less than a week) to stay with Brigette & Lillian. He is able to take unpaid time off, but they cannot afford to do so.

Regardless of where Lillian is receiving care, the couple is asking for the help of their family and friends, during this stressful and emotional time. They would love to have Alan off as long as possible, to spend time with Lillian in the NICU and help Brigette recover from her cesarean section. The road to recovery will be very hard for Lillian and her time in the hospital is unknown.

Please consider making a donation to help Alan and Brigette. Any help or assistance is deeply appreciated. If you cannot make a donation, please send your positive thoughts and prayers to the family. Sharing this link, so that it can reach as many people as possible would be greatly appreciated. Thank you so much for taking the time to read this and God bless!

Donations

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  • Tanya Vaden 
    • $100 
    • 37 mos
  • Christine Bartlett  
    • $50 
    • 37 mos
  • Debra Pienovi 
    • $50 
    • 37 mos
  • Teresa Bell 
    • $50 
    • 37 mos
  • Jill Walker 
    • $1,000 
    • 37 mos
See all

Organizer and beneficiary

Jade Schultes 
Organizer
Portland, OR
Brigette Read 
Beneficiary
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