It has taken me time to reflect internally over the past, almost first year, of my son's life, to tell you what it means to be a Heart Mom. I feel that the answer is unique to every mother because no two hearts are exactly the same. In a short answer, I would say, to be a heart mom, is to feel shock, fear, grief, love, happiness, strength, and faith.
My journey as a heart mom began all by chance, during a routine 20 week anatomy scan. I was due for the ultrasound around Thanksgiving time, so my doctor sent me to a high risk clinic, called Maternal Fetal Medicine, because she knew that they would have more availability during the holiday season. One major difference between a regular OBGYN clinic and a high risk OBGYN clinic, is the type of ultrasounds that they provide to their patients. A regular clinic uses the standard level 1 scan, whereas a high risk clinic uses a level 2 ultrasound. The difference might not sound like a big deal, but when you're working with body parts the size of your finger nail, it makes all the difference in the world. And by the way, that's how big our son's heart was when they found one of his defects. The scan started out normal, joking and chatting with the ultrasound technician. However, we began to notice that she was spending a lot of time looking at his heart. The longer she looked, the more quiet she grew. At one point, our toddler son who had accompanied us, asked what we were looking at on the TV. My husband and I explained to him that it was his little brother's heart, to which he replied, "It has a booboo." It would only take another twenty minutes to find out that our son's diagnosis was correct.
Getting the news was comparable to it how it feels when you're trying to stay under water. Time slows down. You stop being able to hear things clearly. You can't breathe. Then, just as always, you come crashing back up to the surface to face reality. I remember feeling so afraid for our new baby and grief over what seemed to be the loss of a normal life for him. We were set up with genetic screening to make sure our son had no genetic problems. We were also set up with a cardiologist at our closest children's hospital.
It was in the cardiology clinic that I found out there is so much more grey matter in medicine than one would realize. In my mind, I try to keep things in neat little boxes to retain control, but heart defects do not work that way. Originally, Hudson was diagnosed with just Coarctation of the Aorta and Mitral Stenosis. Upon seeing a cardiologist we also found out that there were other possibilities on the table, but we wouldn't fully know until after he was born. Hudson was a back and forth case where they didn't know what he would be and that continues on to this day. A few months after birth we got his entire diagnosis, which is, Coarctation of the Aorta (repaired), moderate to large VSD, Left Superior Vena Cava, Biscupid Aortic Valve, Subaortic Membrane, and Mitral Stenosis.
After Hudson was born, he was transferred to Nationwide Children's Hospital within a few hours. Initially, we were told to expect his surgery to happen around day five to seven. Hudson had other plans. A few hours after being admitted to the children's hospital he began to struggle to breathe, at which point, they intubated him. It was a long two weeks until he began to breathe normally on his own again. They then shut off the medicine they had kept him on, which was keeping his PDA open. Then began the first of many waits. We had to wait until he began to have issues with his heart before they would go in to operate. A few days later that happened. I can not tell you the fear of kissing your 2.5 week old baby goodbye, as they roll him into a surgery he may not survive. I mean yes, a lot of kids do survive these kind of defects, but it is still beyond scary. This part is fear. And the fear does not stop. I feel like sometimes I'm living my life, waiting for my son to go into heart failure. I'm vigilantly watching for the first signs of distress that could indicate it's time for the next surgery. But through all this fear I have learned something: how true strength and faith operate.
When I say strength I do not mean myself. Sure, I have had to, "buck up" and deal with a lot, but it is my two sons who have showed me strength. My older son was on his own with his grandparents for most of the first month of Hudson's life. He took it all like a total rockstar, while it ripped me apart to be away. Hudson showed me strength can come in any shape or size. Sometimes when I am having a hard day, I remember my newborn baby boy lying in a hospital bassinet, with tubes and wires coming from what seemed to be every part of his body. It is then that I realize, if my tiny boy can get through such a life threatening situation with so much grace, then I can get through the trials that life sends my way.
Faith is learned when you feel you have nothing to hold on to, but the hope in your heart. I have always been a person who believed in God and had very strong faith in Him. It was during this period of my life that I feel the Lord really decided to test my faith. I had accepted Hudson's heart problems and the only way I could reconcile them, was to bring glory to God in the matter. I knew if I could show people how great He is, that something would come out of Hudson's suffering. Faith means a lot to so many people. My personal definition of faith is trusting in the Lord to let His will be done in my son's life. I can't tell you how hard it is to let it all go and look to God and say it's up to You, it's Your plan. But when you finally do, there is unbelievable freedom. Don't get me wrong, the fear is still there, but you aren't facing it alone.
CHD crashed into my families world just as it does to the families of every 1 out of 100 babies that are born with a heart defect(s). February is an important month for heart families in the US, as it is American Heart Month. In the spirit of this month I wanted to celebrate, rather than dwell, on my son's heart defects. It is not easy being the parent or sibling of a heart warrior, but it is the most rewarding job in more ways than one. My whole family has learned so much from one tiny human that has not even turned a year old. I challenge you to look to those that have congenital heart defects, with curiosity instead of pity. There is so much you can learn from them. Being a heart mom means to learn a lifetime of lessons from the warrior that you created.
