When you bring your beautiful newborn home, you imagine wonderful things for her. You dream of the amazing young woman your daughter will become, and all the memorable life experiences she will have. You never imagine that she will spend her first first few weeks in the nicu fighting for her life. This is Nikki and Warren Linscott's reality with their newborn baby, Callie.
At a third trimester ultrasound in late August, Nikki and Warren learned of a serious complication with their pregnancy. Their unborn daughter, Callie, has a very rare congenital birth defect, an aneurism in the brain called a Vein of Galen aneurysmal malformations (VGAM). VOGM is extremely rare, affecting between 1 in 100,000 to 1 in 1 million newborns, occur when veins and arteries near the center of a child’s brain form a direct connection with each other during early prenatal development, resulting in a vascular lesion called an arteriovenous malformation.
The mortality rate for this condition used to be very high but modern techniques and treatment have made many advances and most cases are treatable. There are a couple of key elements that effect the outcome; knowing of it, the condition of the heart, the condition of the brain, and the complexity of the malformation. The foremost expert in VGAM treatment resides in NYC, Dr. Berenstien, reviewed Callie's case and thought there was a 60-70% chance they would need to intervene soon after birth. Treatment is measured in years and always involves more than one, however a full recovery is possible.
The initial short term goal was to get past delivery and not have to have any immediate treatment. Knowing that they had a 'war on their hands', Nikki and Warren left for NYC, leaving their 18 month daughter Reese behind to seek the best care possible for Callie.
After a week of hospitalization to prepare for the birth, Nikki underwent a c-section on September 4. Everything with the birth went smoothly and Callie seemed to be doing well. However, three days later Callie had to undergo her first embolization procedure because she was showing signs of heart failure. Dr. B. had hoped this procedure would stabilize Callie enough so that she could go home until her first big surgery in 3-6 months. Unfortunately, days later, Callie had to have another embolization because her heart and lung function started to deteriorate again.
Despite this setback, Nikki and Warren have continued to face each day with inspiring bravery. We don't know what's next in terms of Callie's treatments, but we do know that the Linscott's lives will never be the same. Nikki was unsure if she would return to the workforce after maternity, but Callie's condition has solidified her decision to stay home to care for her children full time.
Not only is Nikki still recovering from her own major surgery, but she and Warren are struggling with being apart from their adorable toddler, Reese, who may be the only person who can truly lift their spirits. There is little we can do to help the Linscotts emotionally, but maybe we can help financially.
The goal of this fundraiser is to raise money to offset the mounting medical expenses and high cost of living in NYC. As you can imagine, immediate, short-term lodging in the city is almost impossible to find. By a stroke of luck, they were able to find top notch accommodations, but it comes with a hefty price tag. They may or may not have to extend their lease beyond September, but it's a given that they'll have to return to NYC for weeks-long visits several times in the near future.
Now is the time for us to pull together and help our friends during this difficult situation so they can concentrate on their precious baby Callie. Please consider a donation.
As the organizers of this fundraiser, we thank you for your loving thoughts, prayers, and support.
Jami and Susie