Christina Phillips

My beautiful but oh so sassy little girls. 💜💞

My two middle babies! These two are partners in crime 💜💙

I had Arya two months ago on September 18th. She was 5 lbs even and 18 inches long. Arya was born with a rare condition known as Type A Long Gap Esophageal Atresia. She’s still in the Nicu and we’re trying to get her transferred to John Hopkins All Children’s Hospital in Florida.

During my pregnancy I had severe polyhydramnios which is a high amount of amniotic fluid. It was super uncomfortable and came with some risks. They told me at around 20 weeks that she had two ventricular septal defects. One closed up and the other one didn’t. Later in the pregnancy I was told they couldn’t see her swallowing or her stomach.

The closer I got to my due date, the worse the fluid got. I was told I’d need to be induced sooner than expected. I was put in touch with the neonatologist at the hospital I was delivering at just 10 days before my induction day. He went over a couple of things that could be the issue but we wouldn’t know for sure until after delivery.

Nicu was in the room when I delivered. We got to hold her for a few minutes and the she was taken away for some tests. I was told the next day that she would be in Nicu for months, would need a feeding tube and surgery. My heart was instantly shattered.

The surgeon here is great but unfortunately this is only the 2nd case he’s seen in 20 years. I started researching everything I could about her condition and reaching out to other families in similar situations. I ended up finding out more about it than the doctors here knew.

They never could give us a straight answer when we asked about plans going forward. We were told to just wait and let her grow some. They waited until she was 7 weeks old to even do a gap study where we found out she has a 6-7 vertebrae gap.

We made the decision to contact 3 of the best hospitals and surgeons who specialize in her condition. Our first choice was Boston but after a zoom meeting with the team at JHAC, we decided to go with them. Our insurance is also in network with them too but of course insurance is giving us a hard time. There aren’t any doctors in Houston that are experienced enough to do her surgery. It’s not a simple fix and I’d rather have someone with experience to do it so she has less chance of future complications.

Things have been stressful to say the least. We go in shifts daily to see her and I can’t wait until I get to have her home where she belongs. There’s so much more to all this but this post is long enough.

💜🖤💜🖤💜🖤