Bring Savvi home: Help Savvi get life-saving surgery.

Hello I am Brittni and welcomed beautiful twin girls into the world in February. Little did we know our world was about to be flipped upside down. Our sweet Savvi girl came out and wasn’t breathing; she was blue and took a few minutes to get her to cry. Once I heard her cry, it was a soft muffled cry, and I instantly knew something was wrong. Her stats were bottoming out, and my heart was crushing all while still working on getting her twin sister out. The doctors rushed Savvi to the NICU, and I didn’t get to go down there and see her until 4 hours later. She was so tiny and was struggling so hard to breathe. The doctors couldn’t pass an NG tube through her nose with multiple attempts. A few hours later, we got the news that we needed to transfer her to the nearest children’s hospital so she could get the proper neonatal ENT treatment, as the hospital I delivered at did not have a team equipped to help her. So we had an hour to say our goodbyes before she was airlifted to the next hospital. Then I got back up to my room to find out her twin sister was being admitted to the NICU due to oxygen levels dropping. A few days later, her twin sister and I were discharged. (Twin sister is fine) and we were headed 2 hours away to see our Savvi girl and figure out what is going on. She went through X-rays, MRIs, CT scans, lots of blood draws, more attempts to pass an NG tube through her nose, a scope down her nose, and we found out that she is diagnosed with Bilateral Choanal Atresia. This is where her nasal passages are blocked by bone and membrane tissue, and she cannot breathe and will require surgery to fix it. Even with this surgery, it may grow back and require multiple surgeries throughout her life. We went through genetic testing as this is very rare and only happens in .85 in every 10,000-12,000 births. Her test results came back a couple of weeks later, and she has the EFTUD-2 gene. This is extremely rare, and there are only less than 200 cases WORLDWIDE! Not many doctors know anything about this gene. That is how rare it is. Everything is a wait-and-see game. Then her ENT team at this hospital said they won’t/can’t do her surgery because of her genetic testing results until she is 3 years old and told us she needed to have a tracheostomy done. We begged and pleaded, and they told us no, and good luck finding a doctor that will perform the repair surgery until she is older. So I started doing a ton of research and found a foundation of people that have the same genetics as Savvi, and everything these doctors have been telling us is a lie. They gave us some contacts to reach out to. We found a group of doctors that are more than happy and extremely experienced with positive results in doing this repair surgery in small babies with very early intervention vs. waiting until 3 years old to have the surgery. The current team she has says they want to have a family meeting, then doesn’t even bother to show up to the meeting and sends others with messages that the ENT won’t speak to us anymore and has nothing left to say to us. They gave us the option of what they can do, and we didn’t accept that. I’m beyond baffled at this point. What kind of doctors call a meeting and then refuse to speak and communicate with us? So we get everything started to transfer her, and we can’t wait to get her out of there to get her the proper care with adequate doctors who are fabulous and experienced with children like her case. I start to see the light at the end of the tunnel, and then we run into insurance and hospital submission complications. Our insurance will only cover emergency transportation, and the hospital is stating that she is not considered an emergency since she is stable but only because she is intubated. If she didn’t have her intubation tube, she would not be able to breathe, and it would be life-threatening. She has to have this surgery in order to live. We were told that we would have to pay for the medical plane out-of-pocket to transfer her. This would cost us anywhere between $50,000 and $100,000 to get her there. So we are praying and asking for any help at all to get our girl the care she needs to come home.

If you cannot help donate, please pray and share this to reach as many people as possible. We need all the help we can get. Thank you and God bless.