State of the Art. Straight from the Heart.
Vanessa and Beech each have strong personal ties to the hospital. Thirty-two years ago, Vanessa was born at Stanford Hospital with unilateral cleft lip and palate—a severe cleft lip and palate on the left side of her face. LPCH plastic surgeon Stephen Schendel, MD, DDS reconstructed Vanessa’s face 15 years ago.
Vanessa and her husband, Julian, knew Beech might also have some type of craniofacial anomaly because the condition can run in families. They also knew that, like his father and at least two of his siblings, Julian has a chromosomal abnormality known as a balanced translocation that can cause severe birth defects. (In a balanced translocation of genes, the ends of two different chromosomes break off, and when the body leaps in to repair the damage, the ends somehow are reattached to the wrong chromosomes. If it’s a clean swap and no chromosomal material is added or lost in the process, it’s called a balanced translocation. Someone with a balanced translocation is mentally and physically normal; however, his or her children may have abnormal chromosomes.)
Therefore, because of her high-risk pregnancy, Vanessa had a chorionic villus sampling (CVS) taken at 11 weeks of gestation—a test for birth defects done about a month earlier than the more commonly performed amniocentesis. The results indicated no birth defects, but that Beech carries his father’s genetic abnormality.
Peace did not reign for long, however. At about six months of pregnancy, LPCH obstetrician Jane Tsung Chueh, MD, noticed in an ultrasound that Beech’s heart appeared slightly enlarged on the right side. She referred Vanessa to Norman Silverman, MD, a pediatric cardiologist at LPCH who determined that Beech had coarctation of the aorta (narrowing of the large artery that carries oxygen rich blood from the heart to the body). If Beech survived to birth, he would need surgery right away.
Ultrasound tests also indicated Beech had a bilateral cleft lip and possibly a cleft palate. “I had gone through years of being teased about how I looked, and I was so concerned about Beech having to face what I faced,” she explains.
At times, it all seemed too much to bear, Vanessa says. But she kept her spirits up most of the time, supported by friends, family, the network of physicians and staff at LPCH, and her local primary care team.
Beech was born on January 28, 2004, surrounded by family and medical staff. Doctors were happy to see that his cleft was remarkably symmetrical, which would make it easier to repair. His palate was fine. But he was having trouble breathing, and after a brief five minutes in Vanessa’s arms, he was rushed into the Neonatal Intensive Care Unit (NICU).
LPCH pediatric cardiothoracic surgeon V. Mohan Reddy, MD, performed heart surgery the next day. Beech was in intensive care for three weeks. Finally, he was released, but two days later he was back with fluid in his heart. He stayed for nearly a month this time. Again he was released, and again fluid collected in his heart and landed him back in the hospital. In March, Beech went home to San Mateo for good, and then in June, his lip was repaired—by members of the very same team that took care of his mom.
Through it all, Vanessa says, she felt wrapped in the arms of an extended family at LPCH. “There was the woman in housekeeping who put a blanket over me when I stayed in the parents’ room while Beech was in the NICU; the time I stepped out to get a haircut and when I came back all of the nurses and doctors in the NICU told me how nice I looked; all of the doctors and nurses, the technicians and staff—they were all there for us, like family,” she says.
“It’s an amazing place,” Vanessa says about LPCH. “All of this talent and it’s all right here.”