Two weeks ago, Sam and I met the man who will save Baby Ocho’s life.
It was humbling. And sobering. And encouraging.
We met with Dr. V at his office in the Pediatric Cardiology Department at the hospital where I will deliver. There was no time limit to this meeting and he made it clear that he would answer all of our questions. He started the meeting by opening a large file and saying, “I already know a lot about Kathleen and the baby.” I was immediately at ease. The pediatric cardiology team meets weekly to discuss people like me. Apparently, I’ve got a seat at the cool kids table. But these cool kids aren’t quarterbacks and cheerleaders but renowned surgeons and cardiologists.
Dr. V started with an overview of the heart. It was a crash course in the cardiorespiratory system. I’m certainly no expert but here are the basic facts. The heart is a four-chamber organ with two atria on top and two ventricles on the bottom. It is divided into the right side and the left side (not as you see it but as it is placed in the body).
The heart is a large pump that moves blood to the lungs for oxygenation and then pumps the oxygen-rich blood to the rest of the body. The left and right atria are smaller chambers that pump blood into the ventricles through one-way valves. The left and right ventricles are stronger pumps. The left ventricle is the strongest because it has to pump blood out to the entire body. In this diagram, the right side is blue because the blood is lacking oxygen as it returns from the body. The left side is red because the blood is oxygen rich after making a pit stop in the lungs.
Deoxygenated blood from the upper part of the body comes into the Right Atrium via the Superior Vena Cava and blood from the lower part of the body comes in via the Inferior Vena Cava. The blood moves from the Right Atrium to the Right Ventricle through the Tricuspid Valve. The Right Ventricle then pumps this blood through the Pulmonary Valve and into the lungs via the Pulmonary Artery.
Once the lungs remove carbon dioxide and oxygenate the blood, it travels back to the heart. The Left Atrium receives oxygen-rich blood from the lungs via the Pulmonary Vein. It is pumped to the Left Ventricle through the Mitral Valve. The Left Ventricle pumps the oxygen-rich blood through the Aortic Valve into the Aorta and out to the rest of the body.
There will be a quiz at the end of this blog post. Not really. I’m not sure I’ve got all the facts right. But I should be in the ballpark
Baby Ocho’s heart has several problems. The most significant problem is that the Right Ventricle and the Left Ventricle are unbalanced. The LV is much smaller than the RV. It needs to grow significantly to support life. Dr. V said that we need at least a 60/40 split between the right and the left side. We will not know if the baby’s LV is big enough until after birth. If that happens, then he will just need to correct the problem with the Tricuspid Valve and the Mitral Valve. Currently, there is no separation but just one common valve.
If the Left Ventricle does not begin to grow, Baby Ocho will need three surgeries.
Surgery #1: Pulmonary Artery Banding
During this first surgery Dr. V will place a band around the baby’s Pulmonary Artery. This band will prevent too much blood flow from flooding the lungs. The recovery time is longest after this first procedure. Ocho will likely be in the hospital for a minimum of 2 weeks and up to a month. The success rate for this surgery is about 95%. Hopefully, we have some time before the first surgery but no more than about one month. It is unclear if Ocho can come home before the first surgery.
Surgery #2: Glenn Procedure
This surgery will take place between 4-6 months of age. Dr. V will connect the baby’s Superior Vena Cava, which brings blood from the upper part of the body, directly to the Pulmonary Artery. Dr. V will also tighten the pulmonary artery band which will have loosened as the baby grows. The success rate for this surgery is close to 100%.
Surgery #3: Fontan Procedure
We spent the least amount of time talking about this surgery which will take place around 2-2½ years of age. Dr. V will re-route the blood from the Inferior Vena Cava directly into the Pulmonary Artery using an implanted valve that looks like a little pair of plastic pants. After this procedure, blood will flow through the lungs without being pumped by the heart. The success rate is about 93%. There is some chance that our child will need a heart transplant if this procedure is not successful. Children like Baby Ocho have an 85% likelihood of survival at 10 years.
After hearing about the surgeries, I asked Dr. V. how many infants he sees with our child’s multiple cardiac problems combined with the Down Syndrome. He said 2 to 3 infants per year. That shocked me. I always like to think my kids are special and unique. Baby Ocho certainly is that, but in the wrong direction.
At one point, everything just struck me. And I said, “Wait. You are telling us that you cannot fix the baby’s heart?” He said, “That’s correct. We can’t fix the left ventricle. We have the bypass the regular function of the heart and find another way to keep the baby alive.” I felt the tears well up. I simply had not realized that.
Doctors fix us. They put things back together and then the body heals. Or we take a few pills or get a shot and the body gets back to normal.
Not in this case.
The surgeon’s office was a testament to his expertise. Degrees and awards on the walls. Pictures of surgeries. Lots of books and medical journals. But I wasn’t focused on that. I was looking for something more. Something that isn’t conferred by a diploma or inscribed on a plaque. I wanted to know if I could trust him and hand over my precious child.
I looked long and hard into Dr. V’s eyes as he talked with us. I watched his hands as he drew numerous diagrams. I listened to the tone of his voice and the cadence of his speech. As my mind absorbed the medical information, my heart dealt with the emotion. And I imagined what the future might hold.
In a few short months, I will literally place my son’s or daughter’s life in Dr. V’s hands and hope for the best. His hands will hold a scalpel, cut open my child’s chest, and begin a long process of reconfiguring a deformed heart. Those eyes, those hands will work together to save Ocho’s life. Simply stated, our child cannot live without this man.
Amazingly, I felt an incredible peace and calm. I think my little one sensed this. Baby Ocho doesn’t move around much, at least compare compared with my other pregnancies. It is strange and disconcerting to not feel much movement. But during the first 10 minutes of our meeting with Dr. V, Baby Ocho was going bananas.
Kicking. Turning. Rolling.
It felt like the baby was trying to tell me something. It seemed like Ocho was saying,
“This is the one. I’ll be okay Mom. Trust him.”
It was the most prolonged movement I have felt during this pregnancy. I suppose I may be grasping for some comfort during this time. But my gut has been right all along that something was wrong with my child. So, perhaps my gut is still correct and something is finally going right.
At the end of the conversation, Dr. V commented that he was impressed with Sam and I. He said we had absorbed a significant amount of physiology and asked good questions. Amazing, I thought. He mistook my dazed and confused look for intelligence. This surgical mask works wonders.
As we left the office I think we were both overwhelmed by all the information. We rode the elevator down in silence. As we began walking towards the Ronald McDonald house, Sam held my hand and quietly said, “We really need the baby’s left ventricle to grow.” I think the severity of the situation finally hit him.
We will soon have a new home at the Ronald McDonald house. It is across the street from the hospital. Families with children with congenital heart disease receive priority placement in the home.
Sam will likely stay with me for the first several days after Ocho makes an appearance. This will be new to him as my mother has always cared for me postpartum. But there will be many tests/assessments and the doctors will be able to give us a better sense of the situation. We need to be together to absorb all of the information and make any necessary decisions. My mother and sister plan to quarantine for the weeks leading up to Ocho’s birth. My sister will run our household while Sam is in the hospital with me. You might consider saying a few prayers for her.
Mom will likely switch out with Sam and help me care for Ocho in the NICU after birth and the PCICU after surgery. As long as the rules allow it (something very much in flux with the Covid-19 situation), Mom will move in to the Ronald McDonald house with me. We will take turns caring for Ocho. And I imagine we will share a bowl of vanilla ice cream every night. She will be a great roommate.
Obviously, there is much to be planned. Greta and Angela return to school this week. Michael and Josephine will spend at least half of their school week online at home. We don’t know what is happening with the grade school kids. Covid-19 complicates things and limits the family that is able to stay in our home and support our kids. But we are working on multiple options and scenarios.
A friend of mine from the Y recently reached out via text. She said something that has stuck with me. She reminded me that “Not every day has to be a good day.“
She’s right. We’ve had many bad days this summer. And many blah days. And many frightening days. And it’s all part of the journey. But I am so grateful that this was a good day. The news was difficult to hear and the road ahead will be long but there is hope for Baby Ocho.
Barring a miracle, which I still pray to Blessed Columba Marmion for every day, Ocho will never have a normal heart. The heart will never work the way mine or Sam’s works. Instead of a four-chamber heart, our child will have a two chamber heart. Ocho may never have the same stamina as my other kids and might not be as strong. He or she will have some wicked battle scars But Ocho has a chance to breathe and to live. All because of Dr. V.
We have met our Super Man.
17 thoughts on “Super Man”
Your blog inspires my faith…we pray for your family every day. Hugs to you, Kathleen.
Baby Ocho could not have chosen a better family or a better mother. Love whooshing your way. Jill
That’s an A+ on your anatomy lesson, Kathleen! We are so profoundly grateful for Dr, V. Let him know there will be at least a small army praying for him. ❤️
Continued prayers for you and your tiny miracle “baby ocho”.🙏🙏🙏. Love your very inspiring blog and unwavering faith. Let me know if you or your family need anything.
Much love and many prayers. God bless you all. Love, Bonnie
Hi Kathleen, this is the “new” Jill that had the pleasure of taking your class at the Y twice before COVID. I was not only hooked on the workout but I loved you and your funny cast of followers! It felt warm and friendly and I wanted to be part of it! You have a beautiful spirit and are an excellent writer! Julie forwarded me your blog and I’m so grateful to be able to follow you on your journey. I am sending you, your family and baby Ocho prayers and good thoughts!
Thanks for reading, Jill. I think of you as Jill the 3rd! Hopefully, classes will begin again in the future and we can get to know each other better. Thank you for the prayers and good thoughts. Keep them coming our way!
The Perrottas are praying!!! Much love to you dear friend!!!!
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