Baby Asher arrived on May 09, 2025, but his fight and our scary journey started 3 months before then.
In February, I underwent a routine ultrasound. After a couple of not-so-good facial expressions from the worker, the ultrasound was done, and we were rushed upstairs and told to wait there, and then we’d talk to someone about the results. The doctor explained that they found fluid in Baby Asher’s chest cavity surrounding his lungs and heart. They didn’t know why or where it came from, but told us it was something to worry about. That same day, I got an amniocentesis done. The procedure involved putting a needle into my belly and extracting amniotic fluid for genetic testing. We were hoping it would give us a reason as to why this was happening to my baby. It did not… We underwent numerous blood tests until we finally received an answer.
The diagnosis was Milroy’s disease. It’s a rare hereditary disease that affects the lymphatic drainage system. It is a mutation found in my FTL4 gene and passed down to Asher. It usually presents as swelling and is a chronic condition that doesn’t typically appear until after birth. For Asher, this meant that the fluid was built up inside his chest rather than the rest of his body. After the diagnosis, Kaiser referred us to UCSF Children’s Hospital. On March 6th, we visited UCSF for an ultrasound and a consultation with the Fetal Heart Team. They determined that the best course of action was a thoracentesis procedure. Like the amniocentesis, they would go through my stomach with a guided needle. For the thoracentesis, the needle would then go into Baby Asher’s chest to extract the fluid. So we did it. I stared at the white ceiling, hoping that my baby would be okay, and refused to look down at my stomach. After the procedure, they showed us Asher’s chest on ultrasound, and his lung and heart had already moved back to where they needed to be. We agreed to return in a week for a check-up. The following week, we came in and got an ultrasound. We found out the fluid had reaccumulated in Asher’s chest cavity and was once again pushing on his lungs and heart. I underwent another thoracentesis procedure, and they successfully extracted most of the fluid.
The fluid reaccumulated in Baby Asher every week. I would go to school, then on the weekend, I would get a thoracentesis procedure done. Unfortunately, this took me out of work. My regular workdays became recovery days where I would sob over the fear of losing my child while holding an ice pack up to my belly, where they did the insertion. This went on until April 24th, when I got my last thoracentesis procedure done. I underwent more than 10 thoracentesis procedures.
After my final thoracentesis, UCSF admitted me overnight for monitoring. I found out that the fluid was bilateral, meaning on both sides of his chest cavity now, and that I was having contractions. They kept me admitted for 4 days and sent me home with the note that I need to get NST monitor tests done routinely now. On May 4th, I went to my hospital in Santa Clara to get an NST monitor test done. It lasted for many hours, and they requested an ultrasound. They found fluid in multiple places of Baby Asher’s body; it was no longer just his chest. I was sent to UCSF that same day and admitted. The new diagnosis was fetal hydrops, a rare but very, very serious condition.
At UCSF, I lay there on my bed, hooked up to the monitor, listening to the sound of Baby Asher’s heartbeat. I was 30 weeks pregnant and had an over-normal amount of amniotic fluid. My contractions continued, and Baby Asher was being monitored almost 24/7. We were just hoping and praying that he would stay in my belly for a little bit longer and that his heartbeat would keep going.
UCSF decided I would stay admitted until delivery came, and we talked about a potential C-section. The NICU team came by and explained that Baby Asher has about a 50/50 chance once he’s out. We agreed that they can do everything in their power to save my baby. On May 8th, I went for a walk outside and ended up losing a significant amount of fluid. I was rushed back into my room, and my contractions started to ramp up. Baby Asher was born by C-section on May 9th at 2:06 am at 31 weeks’ gestational age. This made him a premie with hydrops.
Since his birth, he has been in the Intensive Care Nursery at UCSF, and I have stayed by his side every day. He has gotten four chest tubes, many, many IVs, different ventilator breathing machines, lots of medicine, and feeding tubes. Asher is getting stronger every day. I wouldn’t change this journey for the world. It has been tough and will continue to be tough, but my son is the greatest gift I could ever ask for, and he is such a strong little fighter! We have high hopes for his future as he continues to fight back every single day.
With all my appointments, numerous procedures, and multiple hospital admissions, I was put out of work in March, and staying by Baby Asher’s side in San Francisco can get expensive. His discharge is estimated to be in September, and we anticipate that he will have monthly appointments here in San Francisco. I am facing overwhelming medical bills, food expenses, and essential needs. If you’re able to help, any donations or gift cards would mean the world to me and would greatly ease my stress during this difficult time.
Thank you so much for your kindness, support, and for taking the time to read about Asher and my story. I will continue to update this page with cute videos and photos of my son. He is officially one month old today!! My little warrior!
