Cooper needs heart surgery. He has a condition called aorta coarctation, which is a congenital heart disorder. His aorta is narrowed which puts stress on his heart and makes his heart work faster than it should. He has abnormally high blood pressure in his arms and lower blood pressure in his legs. It is tough, if not impossible, to find a pulse in his lower body.
This journey started at a doctor's visit for a chest cold when he was around four months. His doctor detected a murmur that she hadn't heard before and said that she would track it as it could have been attributed to what was diagnosed as an upper respiratory infection. She said that she would listen for the murmur again at his sixth month appointment.
At his sixth month appointment, Dr. Narumanchi again heard the murmur. But Cooper had a fever, so he couldn't get his shots. So he had to come back a few weeks later to get his shots and she said that she wouldn't move forward with the next step until then.
We went back to WVU Pediatrics a few weeks later in the middle of July for his shots. Dr. Narumanchi heard the murmur again and scheduled an echocardiogram for the middle of August.
We had done a little research about murmurs. We found that upwards of 90% of kids are born with some type of murmur and murmurs usually clear up as children grow.
We figured that it was a typical murmur and would go away. While we were a little concerned about the fact our pediatrician was scheduling the echocardiogram, it didn't seem like an urgent condition. So we figured we would show up to the echo, the technician wouldn't find anything and we'd be on our way, taking care of the miracle that we were so blessed with a few days after Christmas
For those of you who don't know, Cooper is an IVF baby. Pam and I tried to get pregnant for over three years. After a little over a year of unsuccessfully trying, we finally sought help at the WVU Center for Reproductive Medicine (CRM) in Morgantown. The CRM tried several different options that all failed.
After a failed attempt in January 2011, the CRM said our only option left was IVF. We decided to move forward in March. Our retrieval date was April 6 with the transfer of embryos on April 9. On April 23, Pam's final blood test showed that she was pregnant.
Fast forward to his echocardiogram.
We asked the technician when we walked in if she could tell us anything and she of course replied no. She told us that our pediatrician would be in touch with us to go over our results. About ten minutes into our exam, someone called for her from behind the curtain. She responded that she'd be finished in "about 15 minutes." With simple math, I figured we be out of there in about a half hour.
Cooper wasn't the calmest baby during the exam. He was a little squirmy, but given the circumstances of lying on an exam table, I thought he was pretty good. So when the exam passed the 30-minute mark, I didn't really think anything was wrong.
About 40 minutes into the echo, another technician came into the room and the technician examining Cooper asked her a few questions. They were talking quietly and in medical terminologies. Pam and I looked at each other. Something didn't seem right.
After about 60 minutes, the technician said she needed to go get the cardiologist to make sure some of the pictures were clear enough for him. A few minutes later, a pediatric cardiologist came in and was directing the technician as to what pictures to take. It was evident that Coop wasn't in perfect health.
Though we were told that we wouldn't be told the results, the cardiologist told us Cooper's condition. While I appreciated his straight forward approach, it was shocking to hear, especially when we had prepared for news of a healthy baby. Cooper needed to have surgery within the next few months.
A million thoughts ran through each of our minds. Did we miss any symptoms? What was the background of the surgeon? Should we seek a second opinion? Did IVF contribute to this? How quickly did this have to be completed? How long would it take to recover? Will he be able to lead a normal life? Sports? Roller coasters? Doctors visits for life?
There are several symptoms of the condition, most of which Cooper did not have. His feet, toes, hands or fingers never turned blue. He wasn't underweight. He wasn't lethargic.
Our thoughts immediately turned to the surgeon at WVU - Dr. Robert Gustafson (Dr. Gus for short) - and we tried to find as much out about him as we could. We found nothing but great things about him. I talked to a friend whose stepdad works at Mon General, the other hospital in Morgantown. I asked her if he would allow Dr. Gus to work on her son and the answer was "absolutely." Pam talked to two of the nursing faculty members at Waynesburg University, where she works. Both faculty members know of Dr. Gus and Waynesburg's nursing students do their clinical work at WVU. I talked with a friend that is a profusionist in Ohio and asked her to look into Dr. Gus.
Pam reached out to our fertility doctor and he said he would trust Dr. Gus with his two children without hesitation. I talked to a nurse who had done clinicals at WVU. We found out through a co-worker that other hospitals from Ohio send patients to Dr. Gus. Pam heard that Dr. Gus even invented a procedure that saves children from a condition that was once untreatable. We heard other stories from friends, friends of friends and strangers about their experiences with Dr. Gus. Not a single one contained a shred of negative or even neutral feedback.
Pam and I still felt that because of the seriousness of the condition, we needed to seek a second opinion. Since we waited about a month between our seven month appointment and the echo, we weren't sure if UPMC Children's Hospital would be able to see him in the next two months.
On Friday, Pam called UPMC and told them about Cooper's diagnosis and how quickly WVU wanted to proceed. Within a few hours, UPMC called Pam to let her know that they would evaluate Cooper on Monday afternoon.
We spent a good part of Monday afternoon and into the evening - more than five hours - at Children's Hospital. They did two echocardiograms, an EKG and a full evaluation. We met with Dr. Jacqueline Kreutzer, a pediatric cardiologist and Director of Cardiac Catheterization, and she informed us that she agreed with the diagnosis and that surgery should be completed as soon as possible.
Both hospitals had the same diagnosis. The next question was who should we ask to perform the surgery?
It seems that everyone we asked immediately answered UPMC. But only one person - my cousin - had first-hand knowledge of UPMC. UPMC is a bigger hospital. It is world renowned. It does more research. It is a better known place. But we didn't know much about the surgeons. We hadn't heard many things about the surgeons, mainly because most of our sampling was skewed toward Dr. Gus and WVU.
This afternoon (Thursday, August 30) we had our consultation appointment with Dr. Stanley Einzig, a pediatric cardiologist at WVU. Both he and Dr. Gus had received a letter from UPMC letting them know that they agreed with the original diagnosis, but they didn't receive the full report or any of the echo pictures. Dr. Einzig suggested that, instead of putting Coop through another echo, because UPMC sedated Coop for the echo on Monday, he would ask for UPMC's pictures and evaluate them.
We asked if we would be able to meet with Dr. Gus and we were told that he did not have clinicals today. But about halfway through our appointment, Dr. Einzig said that he had called Dr. Gus to let him know we were at the clinic and Dr. Gus was going to come in and meet with us.
We met with Dr. Gus and he was straight forward, as everyone said he'd be, honest and down to earth. We asked about surgery, recovery, what defines success and limitations Coop may have to live with for his life.
Surgery would depend on the pictures received from UPMC. If they were clear, we will talk with his PA next week and schedule surgery, which would more than likely take place in two to three weeks. If the pictures are not clear, Dr. Gus will schedule an MRI for next week, and surgery will take place in two to four weeks.
My biggest concern was not necessarily surgery. Although it is a major surgery, I trust in Dr. Gus and his team. We've heard he is extremely particular with whom he works with and he has been performing this surgery for more than 30 years - he said he's performed more than 300. My fear was the recovery and potential complications.
When we met with Dr. Einzig at WVU last week, he made it seem as if surgery would be performed through the ribs without having to break them. At UPMC, Dr. Kreutzer said that regardless of the surgery entrance - ribs or chest - bones would have to be broken.
My first sense of relief came today in talking with Dr. Gus. He said that while there is a chance that a rib could be broken, he will not perform surgery with the intent of breaking them. Children's ribs are not yet completely formed. The ribs are pliable and he should be able to bend them to perform the surgery.
When discussing recovery, Dr. Gus said that Coop will probably spend about a week in the hospital. If all goes well, he could be fully recovered in four to eight weeks. Pam and I were worried, if bones had to be broken, about everyday things - crawling, changing diapers, rolling over in his crib, riding home from the hospital. Hopefully, his ribs will not have to be broken and Coop will be left with a little soreness.
As far as success, that will depend on a few things. The surgery is done to relieve high blood pressure. Success won't be known until we see if Coop is on high blood pressure medicine at the age of 20. The other determinant would be is if another surgery has to be performed later in life on the aorta. We were given no reason to think that surgery wouldn't have short-term success.
So now we wait. We wait for a phone call next week by Dr. Gus's PA to let us know if we are scheduling an MRI or surgery. Both Pam and I, while struggling with fact that our 8-month-old has to go through this, are confident in Dr. Gus, his team and the staff at WVU. We are confident in his recovery and confident it will be a success.
Our confidence is also in our God. While it may instinct to blame or question God, - we both have - it is in our faith that we know Cooper will make it through this. This is the condition that you hear high school athletes collapsing from and dying. Needless to say we feel blessed that our pediatrician identified the murmur and Cooper will get it fixed.
In closing, Pam and I also take comfort in a few other things. As an 8-month-old, Coop will not remember any pain associated with his surgery. He also has no idea what is in front of him which won't lead to a few weeks of sleepless nights and nightmares. Finally, babies will recover quicker than children or adults so Cooper will be back to himself in no time.
We appreciate any thoughts and prayers. We believe not only in prayer, but in directed, specific prayer.
