Last year my husband and I were thrilled to find ourselves pregnant with our third child. After having two perfect, healthy little boys, we were really just hoping to complete our little family with an adorable little girl. I wanted to bring a little balance to our testosterone driven household. Don't get me wrong, I love monster trucks, guns and mud as much as the next tomboy, but I also craved somebody who loved glitter and dresses and pedicures as much as I do. At the time, we were living in Georgia for my husband's military career, 3,000 miles away from family and friends.
At 18 weeks, we went in for the routine anatomy ultrasound. By a fluke, my doctor had scheduled my ultrasound to be at the fancier clinic for a detailed anatomy scan. That was a very fortunate fluke. During the scan, the ultrasound tech said "Uh oh..." which immediately alarmed my husband and I. She proceeded to tell us that there was something very wrong with our baby's heart. Then she mentioned that on the bright side, it was a girl. Thanks lady. Least of my concerns now...
After waiting for her to consult with the doctor for almost an hour while I bawled my eyes out, the doctor came in to talk to us and have another look. After his thorough look, he said he believed it to be Hypoplastic Left Heart Syndrome, and recommended termination of the pregnancy. When I replied that I would not be terminating the pregnancy, he wanted to do an amniocentesis. I declined that also, knowing the risks associated with it. We were then herded into the office of the clinic social worker where she told us of the grim prognosis and outlined the extensive medical procedures that would be needed if we chose to keep the baby. I still was not going to give up. There was little hope, but a little was better than none.
Following that news, I was scheduled to be seen by a cardiologist for a fetal echocardiogram. I saw him twice, and his explanation of my daughter's heart changed at each visit. All of the medical opinions I was given were not great, and recommended termination. I knew I had to do something different. I researched hospitals specializing in this heart condition and called Boston Children's Hospital to find out if my daughter was eligible for fetal intervention. She wasn't, and so I started researching what to do next. I found that Seattle Children's Hospital in Washington had an excellent program and as a bonus, it was close to family. My OBGYN recommended that I go back home for treatment not only to ensure the baby's health, but so that I could get a little support from friends and family.
It was settled. I would go back home to have the baby. Tearfully I loaded up my boys and we went back home to get better care for the baby, leaving my husband behind at his job.
Once we got back home, I got set up with University of Washington and Seattle Children's Hospital for the remainder of the pregnancy. I was sad, then I was angry, then determined, then defeated, and then all of those things over and over again. Friends took care of me the best they could. They dealt with me having breakdowns, tagged along to appointments, watched my boys, and gave us a place to stay. They put up with my hormonal outbursts and my spiteful attitude even though I didn't deserve it. I was a wreck, but they still kept trying to help me make the best of it.
After being seen by the smarter doctors at Seattle Children's, they determined that my daughter was not a hypoplastic left heart, she in fact had no left heart at all. She was a single ventricle with a few other defects thrown in the mix. I poured over research and tried to keep myself sane. Meanwhile, my husband worked on getting relocated to Washington before our daughter's birth.
At 38 weeks and a few days, my husband rolled up to the driveway of our new house with a moving truck full of our household items. That night, I went into labor. Perfect timing. It seemed to be the first thing that had gone right in a long time. The next morning, I gave birth to our beautiful baby girl. My own OBGYN rushed to deliver even though she was not the on call doctor. It meant the world to me. She and a huge team of interns, doctors, nurses, my husband and one of my best friends helped me through a natural delivery. My daughter arrived and was checked out thoroughly by a huge team of doctors to make sure she was stable, and then I was allowed to hold her for a few minutes before she was taken to the NICU. She was beautiful and looked perfect.
After being stabilized and started on medication, I got to see her for a few minutes in the isolet before she was transferred to the children's hospital. She was scheduled for surgery three days later, but after showing up at the hospital that morning to see her off, they cancelled because the surgeon had been up all night doing an emergency surgery. I was relieved and worried at the same time. She had her first open heart surgery three days after that when she was six days old.
God was watching out for her and everyone who knew us and everyone that had heard of her was praying. She sailed through surgery and recovered so well all the doctors and nurses were in awe. There were squabbles with doctors and nurses about what was best for our daughter, and at five days post op, they agreed that they were not doing anything for her at the hospital that I couldn't do at home, so they sent her home with us. We were so fortunate to only go home with her on aspirin and a small dose of diuretic. We only had to check her SAT's once a day. With the blessing of her regular cardiologist, she nurses exclusively, which was a huge relief to me.
The entire pregnancy I read about the normal things for these type of kids. Oxygen, feeding tubes, formula, multiple medications, and I was terrified. I have always taken a natural approach to parenting being from the pacific northwest. I wear my babies (and toddlers!), I feed them organic foods and meals made from scratch, I nurse, I co-sleep, and I always try natural remedies before using medications for a last resort. So many heart moms talk about the necessity of adding formula to feeds, medications, and isolating their children from the world. I'm not saying that they aren't doing it right at all, each of these kids is totally different, but I am thankful that my daughter is not that unfortunate. I encourage parents to question their doctors thoroughly about if treatments are truly a necessity or just "routine blanket treatment".
A few weeks ago we had a routine cardiology visit and it turned into a stay in the hospital for a heart catheterization. It scared the hell out of me. Her SAT's had been dropping but echo's showed nothing wrong, and suddenly my normally happy baby was cranky and tired and not gaining weight as quickly as usual. During catheterization, they found her shunt was closing at one end, so they ballooned and stinted it open. They also deemed her an excellent candidate for her next surgery, the Glenn procedure. Lucky little girl got to come home the day following and should be home until surgery next month.
Now we prepare for the next surgery which should give us some relief from constant appointments for a little while. I'm nervous. I'm anxious. Other than seeing the cardiologist frequently, steering clear of anyone sick and evening aspirin and SAT's, she is a very happy and healthy little girl. To any unknowing stranger, she looks like a healthy and happy baby. She has certainly been blessed and we are ever thankful for her. I have met some amazing and strong heart moms along the way, and although we are busy with our own children, I am very grateful to keep up with them and know we are not alone in this struggle. I have learned so much from my daughter already about beauty, life, love and patience. I pray God will see fit to let her live a long and happy life, but we will love her and enjoy her as much as we can, for as long as we have.
Kate and Dr. Purmet
