Coarctation of the aorta (COA)
We found out the news at 30 weeks. "I'm sorry, your baby has one kidney and a hole in her heart," the radiologist said. I wanted to curl up in a ball and die.
"How can this be happening to us again?" I said to my husband, as tears poured down my face. This was our third child. Our 7-year-old son sustained a brain-related birth injury from the vacuum extractor; he now suffers from cerebral palsy and epilepsy. Our 2-year-old daughter was born via emergency cesarean section. I was desperate to achieve one natural, peaceful birth experience.
You see I am a birthing Doula. I help women achieve a gentle and calm birth experience. Very rarely have I ended up in the operating room with a client. But I knew what this news meant for me: the OR was imminent. A repeat cesarean section was needed.
Evaluation at Children's
We were sent to Boston Children's Hospital for a fetal echocardiogram. Cardiologist Gerald Marx, MD, explained to us that he had found more problems. The baby had a possible coarctation of the aorta, and there were two ventricular septal defects (VSDs) in her heart. We were told there might be an underlining genetic disorder, like Downs or Turners syndrome. I opted not to do the amniocentesis at 30 weeks. It didn't matter to me; I would love my child just as much.
Kendal Grace is born
Kendal Grace was born via cesarean section on Oct. 10, 2003, at neighboring Brigham and Women's Hospital. She weighed 4lbs., 10oz., and was 16.5 inches long. They took her to Boston Children's Hospital's Cardiac Intensive Care Unit. Dr Marx came in and told us her heart condition was worse than what they thought. She actually had five VSDs, a severe coarctation, a large patent ductus arteriosus (PDA), a condition where the normal channel between the pulmonary artery and the aorta fails to close at birth, a bicuspid aortic valve and a horseshoe kidney that was functioning.
Open-heart surgery was scheduled for four days later. Kendal continued to go downhill, suffering from congestive heart failure. I couldn't leave her. Because there is an indoor tunnel connecting Children's and Brigham and Women's, my husband wheeled me over to Children's to see her constantly. There was a good chance she would not survive, and I needed to be with her. Even though I couldn't hold her, I could look at her. I remember staring at her thinking, "If she doesn't make it, will I remember what she looks like?"
We met cardiac surgeon Frank Pigula, MD, that afternoon. He was very honest with us, explaining all the risks of the surgery. He is one of the most compassionate doctors I have ever met, and he treated Kendal with the respect she deserved.
An hour before surgery, I lost it. Father Robert Nee of Children's pastoral staff saw me breaking down. He pulled me into a room alone. I kept telling him I didn't understand any of this! He told me that none of this was in my control. "God will guide her to where she needs to be. Either way, she will be in the right place," he said. He told me I could love Kendal even if she was not in my arms, and that I could love her during her surgery by imagining my love as a blanket wrapping her up tight. He told me she could feel my love even though it is not physical
Going into surgery
I kissed Kendal goodbye and they took her into surgery. I will never forget the compassion the surgical team gave us. They were wonderful. I handed her to the nurse and we all cried. She was awake when she left us, her big brown eyes peeping over the blanket. She looked scared. The doors closed and I didn't know if I would see her alive again.
Kendal's surgery was a success. They repaired three of the five holes. They surgically closed her PDA and they fixed her aorta. She recovered well.
Kendal is home now growing beautifully. We are blessed to have her in our life. All her genetic testing came back normal. We are thankful. As a mother of two special needs children now, I truly believe God will only give you what you can handle. Don't ask why, because you will never get the answer.
As a Doula, I have learned that no matter how your birth experience turns out, it is still the birth of your baby. It is special in every aspect; embrace the moment no matter what the situation. Thank you to everyone at both hospitals, for the wonderful care and for guiding us through a journey no parent should have to experience. You gave us strength and helped us to see Kendal's strength, even as she lay there with all those tubes. Thank you for all the prayers from family and friends. God bless Dr. Pigula and his team at Boston Children's Hospital. You are all forever in our thoughts and prayers. God bless the parents and children we left behind in the CICU. We think of you often.