‘I cried all day, waiting for a call from our doctor. She needed to see us right away.’: Family discover 2 other children have complex heart issues after newborn’s complications

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“My husband and I are very happily married with four beautiful children. I’m a labor and delivery nurse, and my husband is a carpenter and general contractor.

Courtesy of Marina Mackintosh

Our story started out happy and very ‘ordinary.’ We met, fell in love fast, and knew we wanted to be together forever and start a family. We both agreed on four kids. We had our first son, Asher, in 2010. He was healthy and beautiful. 18 months later, we had our second son, Reid. He was also healthy and perfect. When Reid was just under a year old, we got pregnant with our third child. We were so excited for our growing family. We didn’t find out the gender of our first two boys until they were born. But this time, I was secretly hoping for a girl, so we thought finding out the gender during our 20 week ultrasound would be better… it would give me time to come to terms with another boy, if that’s what we had been blessed with.

I was very nervous the day of our ultrasound. I didn’t know if it was purely because of the excitement/nerves of finding out the gender, or if I had a feeling something else was coming. During the ultrasound, everything looked good, from what I could tell. The sonographer told us it was a boy. I looked at Austin, smiled, and said, ‘At least we make healthy boys.’ The sonographer’s reaction was a little startling. She said, ‘Well, wait…’ We didn’t know what she meant or what to feel, as I laid there waiting for some more information. She told us she couldn’t get a good view of his heart, but she didn’t know why. She was going to tell the OB. She finished the ultrasound and told us to wait. It felt like a really long wait.

His diagnosis was baffling to the physician’s and caused them all to pull out their medical books and research possibilities. Our OB had a hunch, but sent us to a maternal fetal medicine doctor to verify. She had been right. He had a CCAM (Congenital Cystic Adenomatoid Malformation), which is a growth/lesion in your lung. It is rare, and his was large, so it was pushing his heart to the side, which is why the sonographer had difficulty seeing it.

We were told that CCAM’s stop growing at around 24 weeks gestation, and typically, when that happens, the baby will grow around it, it will become benign, and not cause problems. We had biweekly ultrasounds to monitor him and the growth of the lesion from 20 weeks.

It was an emotional roller coaster for four weeks. One ultrasound would show no growth, and we would get excited  things were improving, and the next time, it would grow and our nerves would come back. At our 24 week ultrasound, his lesion had grown, and he had sign of hydrops developing — showing signs of things taking a really bad turn. Our MFM doctor told us he wasn’t going to survive, and basically there was nothing else we could do at that point. He was going to consult with another physician who works in fetal medicine and does fetal surgery, just to confirm his findings. These babies can have fetal surgery in severe cases, and we had researched that during the previous four weeks. We went home, and I cried all day, waiting for a call from our doctor.

My sister-in-law gave me great advice. She thought I shouldn’t wait for his call, but instead, tell him I wanted a consultation with CHOP (Children’s Hospital of Philadelphia). We had read a lot about them and knew they were one of the leading hospitals for both fetal surgery and CCAM’s. So, I called our doctor and asked for a referral. He obliged, yet he didn’t feel I would get a different answer.

Within an hour, an MFM doctor called me from CHOP. She gave me so much hope, and said she needed to see us right away, preferably the next day. We live in Colorado, and it was Thursday night. Our good friend pulled some strings for us and got us on a red-eye flight to New York that night. We left the boys with my parents and arrived the next morning. We rented a car and drove to Philadelphia. By the time we arrived, we were exhausted and scared, but everyone was amazing.

We were at the hospital for many hours. They did a lot of tests and ultrasounds, and we finally consulted with physicians. They said we were walking a fine line between needed fetal surgery, but they wanted to avoid it if possible, because his chance of survival would only be 50%. But they had hope and gave us hope. They gave me steroids to shrink his lesion and told us to return on Tuesday, and then for biweekly ultrasounds. It was then we realized we weren’t leaving Philadelphia.

We were put into a hotel, and two days later, on Easter Sunday, Austin and I flew back home. We spent the day with all of our family, and then put our boys (they were three and 18 months) in Austin’s truck (so he would have his tools and could try to find work). We drove over 30 hours straight to get to our next appointment in time on Tuesday. My job was so supportive and understood I wouldn’t be returning for a while. They held my position for 6 months, and I am still working there to this day.

We eventually ended up living in a Ronald McDonald house, in Camden, New Jersey, for four months. We couldn’t have survived without them or the amazing people we met along the way.

Our son, Camden, was born on July 2nd, weighing 7 lbs 2 oz, at 20 inches long! He had surgery at three days old, and they removed a lobe of his lung. He was discharged from CHOP two weeks later, and we were finally able to come back home to Colorado! We drove about 40 hours with all three boys and arrived home on my birthday. Our entire family was coming to our house that night to meet Camden, and see us after four months. However after a nap, we went to our pediatrician to have Camden’s oxygen levels checked out. It turned out his oxygen saturation level was dangerously low, at 60%. I felt so stupid that, as a nurse, I didn’t even notice. But, we had been exhausted from our drive, and I think I was in denial.

Courtesy of Marina Mackintosh
Courtesy of Marina Mackintosh

We were sent to the Children’s Hospital in Colorado via ambulance, and we spent about two and a half weeks there. It turned out the altitude had caused two pneumothorax’s to develop, but he was such a complicated infant it took a while to diagnose him and figure out what was causing his need for oxygen. Before they diagnosed him, they suspected other problems, one of them leading them to ultrasound his heart. We were told he had a bicuspid aortic valve, which was not causing any problems, but we needed to have him seen by a cardiologist when he was a year old.

Fast forward a year: Camden was a healthy baby, and our previous stress and worry were behind us… or so we thought.

We saw a cardiologist as we were told, and she confirmed his diagnosis and told us we should have the other boys looked at, since a bicuspid aortic valve is genetic. So, we did. Our middle son also has a bicuspid aortic valve, but we were told our oldest, Asher, had something else wrong. He had a congenital heart defect called Anomalous Origin of his Right Coronary Artery. We were told it is rare, not genetic, and an incidental finding. It is one of the leading causes of sudden death in young athletes. We were shocked and not expecting that at all. We were so scared about what that meant for our son.

He had more testing, and in time, we were told he could have open heart surgery to repair his anomaly, or we could keep him from competitive sports. That was such a tough decision that we stewed over for a long time. We inevitably decided we did not want to hold him back his entire life, or worry about him if he pushed himself more than he was supposed to. Such a scary thing for a parent! During our decision making time for Asher, we were discussing a fourth child.

We had always wanted four, but Austin was nervous after what we had been through and did not want to have another child. I was so sad. I didn’t feel done having children, and I had always wanted a little girl. I knew I couldn’t control the gender of another child, but I felt if we didn’t try for a fourth, I would always wonder and always feel incomplete. We were also told, since Asher’s diagnosis was not genetic, we were not likely to see it repeated. So, I convinced Austin to have a fourth.

Fast forward a year later, and we had a girl! Harper was born, beautiful, healthy, and the perfect completion to our family. We were so happy!

Courtesy of Marina Mackintosh

When Harper was nine months, Asher had his open heart surgery at six years old. He did amazing, and is now a healthy 10-year-old!

Courtesy of Marina Mackintosh

When Harper was one, she had an echo to check her heart, due to her brothers’. It turned out our baby girl had a similar diagnosis to Asher, but her’s was Anomalous Origin of her Left Coronary Artery, which is more rare than the right side, and more dangerous. We weren’t given the option for surgery for her, like we were with Asher. She had to have open heart surgery. We were in disbelief and so scared for our baby girl. We were, however, faced with the decision of what age she should have her surgery. With this condition, there is very little evidence of sudden death before the age of nine, but they also don’t typically find it as young as she was.

Our cardiologist is amazing and assisted us by getting opinions from other cardiologist’s around the country. They all said anytime before the age of nine would be acceptable, but we still felt there were so many unknowns and not many definitive answers. Harper’s surgeon suggested her having surgery before she started school, to allow for her heart to get bigger. So, when she was four, she had open heart surgery. She did as great as Asher did, and we were so grateful and impressed by the care she received.

Courtesy of Marina Mackintosh

We feel like we are so very blessed every day, but we also have questioned many times why we were handed such complex issues with three of our children. However, we truly believe Camden saved the lives of Asher and Harper, and that God had a plan, which ended with healthy, beautiful children. It also strengthened our marriage each time, and has shown us how grateful we are for the small and big things in our life.

We are also incredibly blessed by the support we have had from our family and friends, and all of the amazing health care professionals who have taken care of, and continue to take care of, our children.”

Courtesy of Marina Mackintosh

This story was submitted to Love What Matters by Marina Mackintosh. Do you have a similar experience? We’d like to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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