UCSF Children's Hospital

There it was. I was trying to reason it all out at first. It was a "they" really. The ink-black hole of amniotic fluid in the belly of my unborn child shown through an optic mirror and made itself visible in two dimensions. My soul was consumed with an immediacy I could not comprehend. The halo of darkness around the inside of my little girl's scalp was the accompaniment in this orchestra of worry and unknowns. The doctor said, "I'm going to get Dr. Michael Harrison at UCSF on the phone." My wife, already crying, asked again, "What does this mean?"

Hydrops had developed. If we didn't do something -- and fast -- our daughter would be dead. It was just a matter of time.

It was noon on a Tuesday, Oct. 23, 2001.

On Sept. 5, 2001, at 19 weeks gestational age, my wife Lynn and I, my mother-in-law and my mother came to Overlake Hospital in Bellevue, Wash., for an ultrasound hoping to learn the sex of our first child, but really hoping to find out it was healthy. Happily, we found out we had a little girl on the way.

Unfortunately, we also discovered our baby girl had Congenital Cystic Adenomatoid Malformation (CCAM), of the lung. In lay terms: Instead of a healthy upper left lobe of our baby's lung, Nature had malfunctioned and created a cystic mass instead.

The doctor told us, encouragingly, that many CCAMs go away or can be removed post-partum, and only approximately 10 percent become life-threatening in-utero. Even if the mass threatened our baby, she said there was a team of doctors in San Francisco that could remove the cyst while our girl was still in the womb.

At that point, the focus of our care changed from seeing my wife's OB, to seeing a perinatologist on a weekly basis for ultrasounds to track the cyst's progress. At the same time, we looked on the Internet for information regarding CCAM. Every day, it seemed, Lynn would call me up on the brink of tears saying she saw something else and "it didn't look good." We were most worried if our baby, whom we had named Rae, was feeling any distress.

Per the advice of our perinatologist, I contacted Jody Farrell at UCSF at 21 weeks gestation. Jody sent us information from UCSF's website about CCAM and what we could expect.

We followed the cysts' progress via ultrasound week in and week out at first. The mass grew a little here and there but the potential for regression -- or it simply going away -- was still great. The literature Jody had sent me said that if anything serious was going to happen, it would happen before 28 weeks gestation.

Things began to look so good we changed to bi-weekly ultrasound visits. But things aren't always as they seem.

Finally after eight weeks of worry, at noon on Oct. 23, 2001, at 27 weeks gestational age, just 10 days after our last encouraging ultrasound visit, our perinatologist found hydrops in our baby, including edema of the scalp and ascites of the abdomen. The mass had become so large that it was crushing her heart and lungs and preventing them from doing their jobs. If we didn't do anything, our baby would most certainly die.

There was even a danger for Lynn: With hydrops in the child, Lynn's potential for developing preeclampsia (hypertension and edema with potential of progressing to coma and convulsions) was significantly increased.

Our perinatologist was able to get Dr. Michael Harrison from UCSF on the phone and told him the situation. I spoke to him and received from him these two options: Let things "take their course" and take our chances -- which meant losing the fetus -- or do something NOW, as in getting on the next plane to San Francisco and having a consult followed by surgery the next day.

We made some calls to friends and family, then purchased two one-way tickets and reserved two nights' accommodations in San Francisco. After quickly packing what we thought we would need for an indefinite stay and having a surreal lunch purchase at Burger King, we made for my grandmother's home near the airport.

Between sobs and tears, the better part of two hours was filled with arranging insurance, making phone calls -- including one with the man who would be our surgeon, Dr. Craig Albanese -- and eating lemon meringue pie with my mother and grandmother.

Within six hours of discovering hydrops, my wife, my unborn child and I were on a plane to San Francisco. A waxing moon hovered in a clear sky as we flew in over muddy flats to the San Francisco airport. Pepperoni pizza, Sprite, a cramped shower, and a bouquet of flowers sent by friends put us to bed for a sleepless night.

The following morning we went to the UCSF Children's Hospital for a second opinion. We had an ultrasound done with Dr. Vickie Feldstein, who said she would be assisting at the surgery should we choose to go through with it. A poster of Pandora's Box from the San Francisco Art Museum presided over the morning's proceedings.

We spent the rest of the morning on monitors that tracked Lynn's uterine contractions and the heart rate of our baby girl. The girl named Rae in our minds was "the fetus" to the doctors we met with the remainder of that sunny morning in San Francisco. They meant no harm. They've seen this before -- with results going both ways. Being objective is simply part of the game.

After very little deliberation on our part, at 2 p.m. on Oct. 24, just 26 hours after the discovery of hydrops, Lynn and Rae underwent surgery to remove the multi-loculated cystic mass. After saying goodbye at the elevator, I went back to our 15th floor room with a view and contemplated what I would say at my child's funeral.

I spent most of the three hours they were in the operating room down the hill in Golden Gate Park. I lay in the grass, watching people play Frisbee and listening to a group of drummers rap and sing about "that healin' feelin'." I fell asleep with the sun feeling good on my body. A "healin' feelin'" indeed.

I went back up to our room and lay on my bed waiting for Lynn to come back. One of our nurses came in and told me everything had gone well. Dr. Albanese came up and gave me the good news. After a few more minutes -- three hours after they wheeled Lynn with child away -- they came back to me.

Lynn, already fair skinned, was extraordinarily pale. The anesthesiologist said she would look like a train wreck, and by God she did. She was very tired, but aware. The same anesthesiologist reminded me of what Lynn wanted to hear: "She wants to know that it all went well and that the baby is doing very well." I smiled and slid up next to her bed, I told her everything was going to be all right and that she looked good. Lynn, with her eyes closed, nodded and told me my breath stunk. Everything was fine.

The montage in my mind that was two weeks living in a hospital room with one of the most beautiful views in San Francisco is multi-faceted.

Rae's heart racing ... Sonograms and pediatric cardiologists ... Another EKG for Lynn ... Nurse Rita's Halloween earrings ... More pizza ... Innumerable ultrasounds ... Short, long walks down the hall ... Pills and drugs to prevent Lynn from going into early labor ... Magnesium crackles ... My runs in the sun at Kezar stadium ... College campus fast food ... Halloween costume: Tired Strung Out Dad to Be ... World Series Games ... Staying up all night watching Lynn watch the monitors: her uterus and Rae's heart rate ... and many, many more.

We spent two weeks in San Francisco before coming home, the last two nights in a local hotel. The doctors at UCSF offered to keep us so we could have the baby there but we chose to come back to our support network in the Northwest.

We felt comfortable under the auspices of our doctors back home and knew that Children's Hospital in Seattle was available if needed. We would deliver at our hospital as originally planned and take our chances if our baby needed to be transported.

Lynn spent the next few weeks at home on bed rest. We marked the time with final preparations for Rae's arrival, a few more ultrasounds, a few visits from family and friends, and one of the more literal Thanksgivings in our lives. We had a scheduled amniocentesis for Dec. 18th to be followed by a C-section the following afternoon. As had been the case throughout the entire pregnancy, things did not go as planned.

On Dec. 8, 2001, at 34 weeks gestational age, Rae came into the world after an emergency C-section. Lynn's placenta had ruptured, a not uncommon side effect of fetal surgeries, and we couldn't wait any longer. After birth, our neonatologist found that Rae had ingested and aspirated a large amount of Lynn's blood while in the womb.

Rae's troubled left lung, her gestational age and the blood in her lungs conspired against us. Our neonatologist intubated Rae and called the transport team from Children's Hospital. 3� hours after birth, Rae was stable enough to be transported. The nurses wheeled Rae down the hall in the $44,000 transport isolette and mom was able to say "Hello," for the second time and "Goodbye," less than five minutes later.

We knew this was how it could be all along. We had tried to prepare for it mentally: Lynn obviously would stay and recoup at Overlake -- our families were there for her -- and my primary responsibility would be with Rae.

Shortly after Rae left in the ambulance, I left for Children's as well. I had to leave my wife in tears to go and be with our baby daughter. Lynn was able to come across the lake on pass the following day for a little over an hour. On the Dec. 10, Lynn was discharged and was able to spend more time at Children's. For those two days, I was driving back and forth across Lake Washington, at odd times, in attempts to avoid Seattle's dreaded rush hour and trying to be two places at once.

The array of monitors was astounding. At one time Rae had 11 things poking in her, on her or out of her. It was a distressing site to say the least. I stayed with Rae at the hospital in a closet sized sleeping room one floor up from the NICU at Children's. Slowly, Rae was weaned from her oxygen and on Dec. 11, she was extubated and responded as she has since we've known her -- with ease and grace.

We were transported back to Overlake on Dec. 12. We spent the next 16 days at Overlake with their exceptional special-care nurses, lactation nurses, social workers and neonatologists. Rae learned how to breathe, suck and swallow a little better and at the right times.

Mom and dad tried to glean as much information as possible along the way -- changing diapers, pumping, feeding, how to hold, what Rae was communicating non-verbally to us, bathing -- in a way it was better than having a "normal" child and being sent home with a little bundle of joy and no REAL practice on how to take care of her.

We spent Christmas with family in the outside world and with Rae in the hospital. For Santa, we would have to wait another year, but Rae was by far the greatest gift anyone could have ever given us. After one last test for Rae -- spending over an hour in her car seat without her oxygen levels de-saturating -- we went home together as a family for the first time the afternoon of Dec. 28, 2001.

We've made it this far and, today Rae is almost 14 months old and just your average, beautiful, brilliant, amazing child -- just like yours.