Help for Baby Alana, Ceci & Chris!

My name is Lizzy Phillips and I am fundraising for Ceci, Chris and their sweet girl, Alana! Over the past few years I have grown to know Ceci & Chris, two individuals who would give you the shirt off their back without a second thought. I decided (really I gave them no choice) to put this fundraiser together so they can focus on Alana and not stress about finances at this time. I asked them to tell more about Alana below so you all know why this is such an important fundraiser.

Say hello to our little angel Alana !

Our baby girl was born on 4/8/2022 and has been fighting ever since to prove wrong everyone who doubted that she could survive from her Trisomy 13 diagnosis, and she’s doing a good job at it. She’s our little blessing and we wouldn’t change her for the world.

To give you some background on Alana we need to go back to the early days of pregnancy.

At 20 weeks pregnant we got news on the anatomy scan that some anomalies were found in Alana's heart. Upon receiving this news, we were devastated by the comments made in that room and the affirmation that she would have a low chance of survival. We decided we’d do everything in our power to help Alana live for as long as God would allow us and after we overcame the shock of the news we heard, the drive to give her the best possible chance kicked into gear. We proceeded with a referral to a perinatologist to understand more about what was causing this heart defect.

The diagnosis turned out to be an extremely rare condition called Patau syndrome or Trisomy 13. This means Alana has an extra 13th chromosome and she was bound to have more than just one health issue. When the diagnosis was given we still had hope and we were determined to give our daughter a chance, despite termination of pregnancy being suggested by more than one doctor instating her only chances were dying in the womb or surviving only a day or couple days after birth.

The diagnosis and the approach of the doctors that gave it to us gave us clarity that the road wasn’t going to be easy to find doctors that were willing to give Alana a chance. We researched everything we could about T13, we found amazing families with trisomy 13 kiddos living and thriving, joined support groups and a wonderful association that helps parents carrying to term after diagnosis like ours. After talking to countless people in the Trisomy community that have dealt with what we were going through, we found out that the struggle to find doctors willing to work on their baby without discriminating them because of their extra chromosome was similar to ours. We took advice and suggestions and it wasn’t until around week 30 that we found a group of doctors that were willing to help us give Alana the chance to live.

Through the help of these doctors we were able to obtain a diagnosis for her heart and the possible outcomes and plans for when she was born, always knowing that we would have to confirm it with an echocardiogram after birth. We learned she had a small omphalocele also (a little sack attached to her umbilical cord root where some of her intestines were contained). We also found out she had bilateral cleft lip and palate and microphthalmia (one eye underdevelop).

Alana was born at 37.1 weeks and she has been fighting and beating every odd against her, giving us hope everyday. We truly believe that only God and her know her path.

Since Alana was born, she have been at Childrens Hospital of Atlanta. Alana’s immediate doctors at the hospital were located in the Cardiac Intensive Care Unit and they told us she has Pulmonary Atresia with VSD, MAPCAS, Dysplastic Mitral Valve and Hypoplastic Left Ventricle a combination of heart conditions that lead to CHOA cardiologist to not offer her heart surgery. We are still hoping they will take her later on if she demonstrates that she is doing good but meanwhile we are getting second opinions in other “trisomy friendly” hospitals. Once she was ruled out of heart surgery she was transferred to the NICU, where we have been ever since. Alana has been intubated from the third day of birth until now and thankfully we got her accepted as surgical candidate for a tracheotomy so she eventually can go home. On Wednesday 5/4 she got a triple surgery, which she rocked! She got a tracheotomy, her omphalocele repair and the placement of a g-tube for feedings (since she cannot feed orally while she has the cleft palate open). She has been recovering well from her big surgery and we pray she will only improve from now on.

With everything that is happening, we have unfortunately had to take a step away from work to be there for our daughter. With short term disability coming to an end soon and no income coming in the near future. This has put an extreme burden on the future with everyday life expenses.

With this go fund me we would like to accomplish just a few things:

1. Cover everyday expenses that allows us to be with Alana at the hospital and get the necessary training for her care once we go home.

2. Move to an apartment that is not on the third floor (like the one we are renting now) so that when Alana comes home, the carrying of her and her breathing support equipment is not dangerous in anyway.

3. Spread awareness about Trisomy 13 and how the doctors suggestions for termination is not always the right one and instead some of this kiddos live and thrive. Our baby Alana has been with us for almost 2 months now and despite it being tough, she has truly made us happier than we could ever be and we are beyond blessed to have her.

Thank you for reading our story and we would like to relay our appreciation to anyone that donates. Every little bit helps in giving Alana the best possible life. Trisomy babies are indeed compatible with life and love and the biggest blessing to their families!!