Patient Stories
Twin-Reversed Arterial Perfusion Sequence / TRAP Sequence
Fetal Surgery Saves Ryan Zachary, a Baby with Heart Enough for Two.
Ryan Zachary Malacki celebrated his third birthday on April 15 of this year. No one who sees this happy and healthy little boy now would ever guess what Ryan went through to survive before his birth. The following is his mom Heather's story of how Twin-reversed arterial perfusion (TRAP) sequence nearly killed her son and how bringing him to the Fetal Care Center of Cincinnati saved his life:
It was our first pregnancy and we were expecting twins. We were very excited. However, at 18 weeks, my OB / GYN detected something wrong. I was sent to a specialist and diagnosed with TRAP Sequence, a rare condition that only happens with identical twins. One twin did not have a heart, and could not survive. But because identical twins share a placenta, the healthy twin's heart was pumping for both babies, even though the one twin had stopped thriving.
In TRAP Sequence, the non-viable fetus can actually grow larger than the healthy one, putting extra strain on the heart of the healthy baby. The first specialist told us there was nothing they could do, and that there was a 90% chance our healthy baby would have heart failure and also fail to survive. I was already having contractions at 19 weeks, so we were prepared for the worst. I thought I'd go into labor and watch our healthy baby die.
Then we heard about the Fetal Care Center of Cincinnati and, at 22 weeks, came to visit Dr. Timothy Crombleholme. That was on February 23, 2004. I went through a whole day of testing. Dr. Crombleholme and his staff reviewed the results with us and suggested we wait a week and test again, thinking the condition might improve somewhat on its own. If not, surgery was an option and would be required to save our healthy twin.
A week later, testing indicated surgery was still required. Dr. Crombleholme, Dr. William Polzin and a team of other physician specialists explained the procedure and prognosis to us in great detail, then suggested we go back home to Pennsylvania for the weekend, talk with our families and decide if we wished to proceed with surgery.
We had great confidence in the doctors in Cincinnati and decided to proceed with the surgery. On March 2, 2004, Dr. Crombleholme performed fetal surgery that closed up the umbilical cord from the non-viable twin to help protect the other fetus.
Everything went well, and I spent two nights at Good Samaritan Hospital under the watchful eye of Dr. Polzin and a whole group of wonderful nurses and other physicians. I was discharged on March 4, 2004, and went back home where I was told to stay on bed rest. I was monitored by a high-risk OB / GYN, along with my regular doctor, and had weekly ultrasounds. Dr. Crombleholme stayed in close contact with the doctors in Pittsburgh.
On April 15, 2004, at 29 weeks gestation, my water broke and at 11:56 pm, Ryan Zachary was born. He was a tiny but mighty 3 lbs and was 15 and 1/4" long. We were ecstatic! Ryan stayed in a NICU for four days, but never required a ventilator and had no major setbacks. He was then moved to intermediate care, followed by a move to the "feeding and growing room" (convalescent care) on May 5, 2004.
After spending a few weeks in May at a Transitional Infant Care facility in our hometown, we took Ryan home on May 26, 2004, with no monitors, oxygen, or any other home interventions related to his condition. That whole first year, we had no issues or problems at all. Since then, Ryan required physical therapy to work on his gross motor skills but that was more of a precaution and there was nothing really wrong. In fact, he was walking at 15 months. Today, there are no ongoing issues whatsover and Ryan is considered a normal three-year-old.
If it weren't for Dr. Crombleholme, we wouldn't have Ryan. Everyone we met at the Fetal Care Center was so wonderful. We were greeted with open arms in Cincinnati and felt like we belonged. We still stay in touch with Dr. Crombleholme and plan to come visit him and the other doctors and nurses in a few months so they can all meet Ryan. He's definitely our miracle baby.
Heather (Ryan's Mom)
To request an appointment at the Fetal Care Center of Cincinnati or contact us, please use our secure, online appointment form or call 1-888-338-2559 (1-888-FETAL59).
