My son Apollo was born after an extremely scary cord prolapse at home followed by an emergency C-section (in which my husband knelt on the OR floor and held the umbilical cord in place). It was terrifying for everyone involved. When I awoke from my general anesthesia my only concern was if my baby was alive. My husband, Chuck, told me he was alive and well and came in to the world with an APGAR score of 8! He had a bit of trouble breathing well on his own at first and his lungs were so "wet and noisy" the doctors had a bit of trouble getting clear heart tones though the stethoscope. Despite his rocky start, within half a day he was released from the special care nursery and declared "perfect". It was with thankfulness and relief that we headed home with our precious son.
Apollo was gorgeous and chunky and we were all immediately smitten. At home, however, he began to have trouble right away. First he had a poor latch, then we realized he was tongue-tied. He had a frenulectomy (the tongue-tie removed) at 2.5 weeks. And he didn't sleep. Apollo would stay awake for four, five, six hours as a newborn, then only sleep for five or ten minutes at a time. While he rarely all-out wailed, he fussed any time he was awake (which was almost always).
At 3 months old he got what I thought was a cold. All of a sudden his breathing sounded wet and raspy. Strangely he never developed a runny nose, fever, or congestion. Apollo was still a terrible nurser. He never seemed satisfied when he was finished. To make matters worse, he stopped growing. Apollo didn't gain an ounce between 4 and 7 months old. My healthy 14-pound 4-month-old slowly transformed into a skinny sickly looking 7-month-old. He was active, so the doctor wondered if that played a role. We gave Apollo his first bite of food (sweet potato) on Thanksgiving. He immediately gagged and vomited it up. I joked that he acted like I was trying to kill him; words that would come back to haunt me.
Mealtimes soon became a time of near constant tears for Apollo. He would take a bite or maybe two (three on a really good day), and refuse more. He would turn his head and scream. Nursing was the only thing that would calm him. Our doctor referred us to a pediatric ENT who diagnosed him with reflux and a milk allergy. I immediately removed all dairy from both our diets and he began reflux meds a week later.
At 11 months old Apollo was hospitalized with RSV and pneumonia. He had gotten yet another "cold" that soon had him feverish and in respiratory distress. I was sent from my doctor's office to the hospital emergency room. Apollo was admitted for two nights, released, then readmitted within 24 hours. We were told he was "much sicker than your average RSV baby."
When he still didn't gain weight, he was given a sweat test for cystic fibrosis, he had feeding evaluations, and a visit to a pulmonologist. He was on a high-fat diet and now added a concerning cough to his list of ailments. I would lie awake at night listening to him cough and cough and cough. His breathing was so bad at this point I was getting dirty looks from fellow moms every time I took him out in public. By the time he was 1.5 years old, we noticed he would get short-of-breath from just running around our living room. He acted like a little old man.
All of this was recorded on my blog as he grew. The same readers who anticipated his arrival sighed with relief after reading his terrifying birth story and now left comments full of advice. I spent hours researching on the Internet. I looked into every possible diagnosis put before us. Apollo continued to make his rounds from doctor to doctor. No one could figure out what was wrong.
One day a blog reader sent me an email saying Apollo's symptoms sound very much like her son Brenden's. Brenden was diagnosed at age 11 with a rare heart defect called a double aortic arch. In this condition, during fetal development the aortic arch forms a ring around the esophagus and trachea. I remember carefully writing the words "double aortic arch" down so I could research them. I read her son's story and there were many similarities. Not everything matched. Her son didn't have trouble gaining weight (he outweighed his twin, in fact), but so much else sounded the same. The more my husband and I researched, the more we became convinced this was the answer to all of Apollo's health issues.
There are some things you can say to your doctor, and some you cannot, no matter how much you like him. For instance, I could hardly walk into the doctor's office and say, "I have this blog . . . and this lady read about Apollo and thinks he might have the same rare heart defect as her son." I did ask the doctor if it was possible that he had a double aortic arch. I was assured that could not be his issue as his heart sounded "fine."
We went through more months of doctors and weight loss. The ENT eventually did a bronchoscopy to specifically search for a double aortic arch and missed it entirely. He told us "if" he had one, it was mild and he would likely "outgrow" it. Unfortunately, no one "outgrows" a double aortic arch. A double aortic arch is always surgically corrected if the patient is symptomatic. A person with a double aortic arch is literally being strangled by their own heart. The bigger they get, the worse the symptoms become. Just like Apollo.
Less than 24 hours after we were told Apollo didn't have a double aortic arch, he choked on a piece of carrot. I was unable to dislodge it with the Heimlich maneuver and told my 11-year-old son to call 911 while I worked on his brother. Before the ambulance arrived he passed out, then slowly roused himself. After being transported to the hospital and being checked out, we brought him home.
That was the last straw for me and Chuck. We agreed to call our doctor's office every single day until he either 1) referred Apollo to a cardiologist or 2) ordered an MRI (we knew from our research this was the best way to diagnose a double aortic arch). It took only four days of calling before the MRI was ordered. Three weeks later Apollo was diagnosed with a double aortic arch during his MRI at the age of 21 months. He had heart surgery to correct it six weeks later.
The diagnosis was really only the beginning of Apollo's journey, but I am so thankful to that blog reader who went out on a limb to suggest my son might have the same rare (less than one percent of all heart defects) defect as her own son.