My son's open heart surgery to repair a VSD/ASD (a short memoir)

Dennis and I spent the better part of our relationship not wanting kids. We discussed it at great length. We didn’t want the responsibility. We wanted freedom. We wanted to maintain our lifestyle. (Like we were jetting off to Paris every other weekend…ha!) Then, one day, I felt it in my bones. I wanted a baby and I couldn’t think of anything else. So we tried. And I got pregnant. And we had our Weston. Our beautiful, happy, baby boy.

The next day, after being examined by the hospital pediatrician, we found out he had a heart murmur. Three days later our pediatrician referred us to a pediatric cardiologist. About a week later, she diagnosed Weston with a congenital heart defect- a Ventricular Septal Defect (VSD) and an Atrial Septal Defect. Two holes in his heart.

In many cases, VSDs and ASDs close on their own. Sometimes, they never close, but the individual can lead a normal life with little worry. It all depends on the size and location of the defect. In Weston’s case, the VSD was very large and extremely close to a valve, and if left untreated could cause serious damage to his heart and lungs.

Two weeks after he was born I should have been home relaxing, laying with him in my arms, recovering from giving birth. Bonding. Instead, I found myself driving around from pediatrician to cardiologist to surgeon to track his development and prepare for open-heart surgery. The day we found out he would eventually need surgery we felt anxious, sad, broken. We didn’t understand. It was Halloween. We went home, disconnected the doorbell and hid downstairs cuddling our little man and crying, scared out of our freaking minds.

We were suddenly thrown into the life of parents with a ‘sick kid.’ Blood tests, diuretics, liquid vitamins. Round the clock feeding. Extra pumping sessions. Ultrasounds, EKGs, weight checks. Back to work. Weight loss. Failure to thrive. Family Sick Leave. Two and half months later, it was time.

People ask me how I got through it. How I stayed so strong and stoic. How I didn’t cry every time I thought I about what could happen. They couldn’t imagine. The truth is, after the reality of the situation sunk in, I never thought of him as a ‘sick kid.’ Yes, I knew that he had a heart defect. That he wasn’t gaining weight or growing at the proper rate. But after talking extensively to our pediatrician, the cardiologist, the surgeon, and our nurse practitioner case manager, I knew he could be fixed. His condition was scary, but once we calmed down, researched the condition, and talked at length with the doctors it became more manageable. We were lucky. He had something that could be fixed. Easily. Well, if you’re a pediatric heart surgeon that is. Every time I talked to the doctor or surgeon they did not seem worried. Of course there is always a risk, but as they explained, that risk is so small with this kind of procedure. VSD/ASDs are common and this procedure is performed by pediatric cardiologist surgeons daily across the country.

Don’t get me wrong. I was scared. In his two and half months of life my baby boy had brought me more joy and love for him and my husband than I could have ever imagined I would feel. I couldn’t imagine losing him. We never even uttered the words ‘risk of death.’ We never had to. The doctors could see the questions in our eyes as I am sure they do with every patient and they did everything to reassure us that the risk was so minimal that we didn’t have to think about it. I tried not to, but of course I did. In the weeks preceding the surgery, during our morning nursing session I would talk to him and tell him that he needed to eat as much as he could and rest as much as he needed. That I would literally let him nurse round the clock if I had too. That I would do anything for him. I told him all the wonderful things he had done for me and his daddy in his few short months on the planet, how happy he made us and that he couldn’t leave us. I only allowed myself to dwell on it for that morning nursing session. I cried. I held him. I nursed him. And then we went about our day. I think allowing myself that short time to process the unknown but not let it linger throughout the day was important. At the end of the day, I put my faith into science, modern medicine, and some of the best surgeons in the pediatric field.

On December 19, 2013, Weston went in for surgery. His Grandma Deb-Deb, Grandma, Papa, and Aunts and Uncles were there to support us. The nursing staff walked us through the paperwork, the risk of surgery, what we would we would see in the NICU post-surgery. We put on his little hospital gown and kissed him a thousand times. He smiled as they wheeled him away into surgery. The surgery was performed by Dr. Michel Ilbawi and Dr. Sujata Subramanian and a team of highly skilled nurses and nurse practitioners. We went to the waiting room and three and half hours later he was fixed! They were able to patch the larger VSD with gortex and the smaller ASD by simply sewing it together. Muscle would eventually grow over the gortex and his heart should grow normally.

I know it sounds funny, but I think I was most distressed when I saw Weston in the NICU. He had tubes coming from what seemed like every hole in his body. He had a drainage tube coming out of his chest. He had a little O2 monitor on his baby big toe, glowing a bright red, which we nicknamed Rudolph toe. As he was coming out of anesthesia, he had these extremely heavy breaths and his eyes would sort of pop open, roll to the back of his head, and then close. As soon as I walked in, I broke into tears. The next day, I was finally able to hold him. And again, I broke down in tears. I’ll never forget Dr. Nader, the cardiologist on staff that afternoon. She let me hold my baby, encouraged me to nurse him, and told me the best medicine for our little Weston was lots of love, smiles, and cuddles. The staff took amazing care of our son.  Every single member of the staff we encountered was genuinely concerned, answered our questions, extremely respectful, and just plain nice. We ended up having to spend three days in ICU, because there was a shortage of beds in the children’s hospital. In most cases, the child is transferred to a regular hospital room about a day later as long as there are no complications and everything checks out. We were encouraged to stay at the Ronald McDonald House across the street. I cannot say enough good things about that place either.  Beautiful, comfortable rooms, a wonderful staff, snacks, food, coffee.  An amazingly comfortable bed.  It was the perfect place to relax and sleep after long days and evenings in the hospital.

We took him home two days before Christmas Eve. We had some restrictions- we couldn’t hold him under the armpits, we could only cradle him, and we had to sponge bathe him for a few weeks- but that was it. They instructed us how to care for his chest tube incision, what to look out for in terms of infection and healing and sent us on our way. Follow up appointments were a breeze and almost a year later, he’s doing wonderfully! He has a scar on his chest that we keep covered in the summer. According to the Nurse Practitioners- as long as we keep it out of the sun, by the time he hits puberty, there will be almost no scar left.

There isn’t a day that goes by that I don’t think of and/or sing the praises of Dr. Ilbawi and the staff at Advocate Children’s Hospital. They saved my baby and for that I am forever grateful.

I recently was contacted by our pediatric cardiologist's office to see if I would talk to another mother whose son was recently diagnosed with a similar condition.  I am very thankful that I was able to share our positive story with her and if you stumbled upon this post looking for some answers, I would be happy to share more of our story with you.  I know there are people out there who are not so lucky and I cannot even begin to understand the pain and suffering that some families go through and my heart goes out to those families. We are fortunate enough to be a success story and I acknowledge that every day.