Our story began on March 5, 2012. We were almost 26 weeks along with our second child, a son. The pregnancy had been uneventful; however, at our 20 week ultrasound our obstetrician was not able to get a clear view of our son’s heart. He told us that from what he could see, his heart appeared fine but he would like a follow up ultrasound in six weeks. We felt no cause for alarm and were pleased that our doctor was being so thorough.
On the day of the follow up appointment, our doctor informed us he saw a large collection of fluid in our baby’s chest around his lungs. I also had too much amniotic fluid. He referred us to a maternal fetal medicine specialist who we saw later that afternoon. The specialist repeated the ultrasound and ordered a variety of tests including lab work, and a fetal echocardiogram-an ultrasound of the heart. In addition, he recommended an amniocentesis to check if there was a chromosome abnormality or infection.
On March 13, 2012, we drove to a local hospital to undergo the additional testing. Within the week that had passed, the fluid in the baby’s chest had greatly increased and was compromising the growth of our son’s lungs. He was diagnosed with Non-Immune Hydrops Fetalis, or hydrops, a grim diagnosis with a low rate of survival. We were devastated. We were admitted to the hospital to facilitate testing. The medical team was not at all encouraging and informed us that our son was not likely to survive the pregnancy. They wanted to watch over the baby and me for the remainder of the pregnancy but were supportive of my wishes to return home and be watched over closely by my own doctor and maternal fetal medicine specialist.
While in the hospital, my husband spent a lot of time discussing our plans and researching next steps. We learned of fetal treatment centers in the United States and were determined to seek help for our son. Our son remained active with a strong heart rate, so we were not going to give up on him! Our maternal fetal medicine specialist was incredibly supportive and made a referral for us for a second opinion at the UCSF Fetal Treatment Center. We were grateful to have an incredible fetal treatment center so close to home!
On March 20, 2012, I was admitted to UCSF. An ultrasound again showed further increase of the fluid in his chest and it had now progressed beyond the lungs and into the skin. Again, we were heartbroken. A fetal echo was repeated and was normal, so we held onto the hope that the baby’s heart was still strong.
We met with Dr. Lena Kim of the Fetal Treatment Center Team to discuss treatment options. She presented a couple of ways of draining the fluid and we decided to proceed with one that carried the lowest risk, a procedure called a thoracentesis. The fluid around our baby’s lungs was to be drained using a needle inserted through my belly and into the baby’s chest. The fluid was sent to the lab for testing to see if a cause for the hydrops could be found.
Unfortunately, the fluid quickly accumulated again, and it was felt that his chances for survival were deteriorating. We had a tearful and heartfelt discussion with Dr. Kim and shared with her our strong desire to try the next step in an attempt to help our son, whom we had named Quintin “Quinn” Rafael Mendez, IV.
Again she supported our decision and after discussion with the rest of the fetal team, we proceeded with the placement of a thoracoamniotic shunt. I would undergo a procedure in which a catheter would be placed in Quinn’s chest which would allow the fluid around his lungs to drain into the amniotic fluid. The procedure went smoothly for the right lung, but attempts to place a shunt to drain the left chest were unsuccessful. I was monitored overnight and was able to return home the following day with weekly ultrasound follow up at UCSF and my specialist at home.
At a regularly scheduled follow up appointment at the UCSF Fetal Treatment Center, it was discovered that I was leaking amniotic fluid. I was only 30 weeks pregnant. I also had been bleeding quite significantly over the course of the prior week, so it was decided that I would be admitted to the hospital and stay for the remainder of my pregnancy. Quinn’s heart still appeared to be strong, but an ultrasound showed decreased fetal movement, and no significant changes in the amount of fluid around his lungs. We clung to the fact that the fluid accumulation had not worsened, but we were still well aware that his condition was tenuous. I spent the next few days in the hospital and met with incredible neonatologists, fetal treatment specialists, obstetricians, social workers, and chaplains.
Each member of the team offered support in one way or another. We were also given books about how to talk to our four year-old daughter about losing a sibling. We were prepared to anticipate an uncertain outcome. It was a few of the most difficult and emotional days of our lives.
In the early morning hours of April 7, 2012 at 31 weeks I went into spontaneous labor and Quinn was born via C-section. I had so much fear, but knew that Quinn and I were receiving the best possible care at UCSF and that the team would be able to give him the best chance of surviving. After thirty minutes of CPR and two hours of intense attempts at stabilization, Quinn was finally able to be moved the Intensive Care Nursery (ICN). He had a tube placed in his mouth to help him breath and he had tubes placed in his chest to help drain the fluid around his lungs. He had more IVs and infusion pumps delivering meds and blood to his little four pound body than I had ever seen in my 13 years as an oncology nurse. But we knew our son was a fighter.
Day after day, my husband Rafael and I sat at Quinn’s bedside, participated in morning rounds, asked questions, researched, and came to intimately know everyone who was working so hard to save our son. They all began to feel like family. The first week in the ICN was turbulent, but then Quinn turned a sharp corner and never looked back. He spent 41 days in the ICN at UCSF Benioff Children’s Hospital and was then able to be transferred to a hospital closer to home. He spent another 8 days at our local hospital before being discharged home on May 25, 2012.
To this day, Quinn has done exceedingly well and is meeting the milestones of a normal, term baby.
We will be forever grateful to the team of brilliant minds at UCSF that came together to save our son. Without their expertise we would not have been able to bring him home. My son Quinn is living proof that the gift of life is possible thanks to the UCSF Fetal Treatment Center and for that I am forever indebted.