Madileine's Heart Story
| Told by her mom Misty.
Diagnosis: Single Ventricle, Patent Ductus Arteriosus (PDA), Heterotaxy
I am a Christian woman, and I did and still do at times ask God some hard questions about my children and their precious hearts he’s formed before I gave them their names. After we went to the perinatal specialist who would go on to deliver Madileine, we went to the cardiology clinic for a more detailed diagnosis and birth plan. Honestly, we were advised of all of the options, and how to socially make things comfortable if we wished to terminate. Our family chose not to terminate Madileine, we believed that God had created her for a reason and she was called according to His purposes–we had our baby sister–and that was all that mattered at the time. As the days grew, I gained a new found confidence that -yes, I am called to carry a child-a child who is sick, and I chose to use that information to empower myself to go on and take the best care of myself and baby as possible for after delivery, it was up to God. Of course, I felt scared, angry, victimized (for I thought one child with CHD was enough heartache), and I tried to figure out how to explain it all to my three year old. “Mommy has a baby in her tummy, ‘our baby’.” I had a shower at work, but I didn’t decorate the nursery. I just kept everything in check until we were able to bring her home. Lauren was diagnosed with CHD at 90 days old through the ER, so I had experienced bringing a baby home from the hospital and then have my world turned upside down, and I thought by not preparing the “nest” that somehow that would ease the hurt if things didn’t go “right.” I was wrong. The baby matters–the baby exists. It doesn’t matter how many days, weeks, months…minutes–it all matters. At times during the pregnancy, I grieved. At first I saw it as a personal weakness. But now, I think that is important, sometimes I felt resentful of all of the millions of women who take their healthy pregnancy and healthy child for granted. I also felt “mad” at people who keep perfectly healthy babies and mistreat them or see them as a nuisance. I didn’t have that luxury, for I was carrying a baby that would be born blue and have a big fight moments after birth. I gave myself the permission to feel a little sorry for myself, and for the situation. You know, we live in a “suck it up” society, the “I can handle it all” society–work…even though your heart is breaking–get enough rest…even though every time you close your eyes you wonder if your dreams are going to turn into nightmares one day. This info and diagnosis is big-especially at first. There is so much vocabulary and terminology to take in. Mom, it is important to visit with and surround yourself with people who are the voices of support, knowledge, and understanding. It is so easy to get caught up in other people and their stories, old adages and empty cliche’s, and advice that worries instead of comforts. When I talked with people about my pregnancy, I made sure I knew who I was talking to. By that I mean I would think…is this person really wanting to “know” or are they just going to see this as “news.” I have found that some people, for a lack of education, maturity or emotional strength…whatever, they really don’t want to know details–to cope, I prepared a canned answer like “We’re just taking things one day at a time.” or “It’s all in God’s hands.” Then I saved my emotional strengths for the close people around me who really could handle knowing more. My husband, well he would look at our 3 year old miracle, and just assure me that everything will be fine. He would say, “Misty, we already know what to do , we know all the doctors, we already know what’s ahead…we know she’s going to be fine.” I just realize that the road to “fine” is just that –a road–not a destination. I feel my experience is unique because I’m on all sides of the statistics. I have a child with complex CHD who is thriving now at age 6 post three heart surgeries, Madileine went home to be with the Lord 21 days after birth, her report revealed she developed a clot in her shunt during her healing process, and after much thought and prayer, we delivered last Christmas (2 &1/2 years after Madi’s death) we had Andrew, with no CHDs. For me, information was a comfort, and still is. I know what my both my daughters faced, and what Lauren is going through. I wrote down what the doctors said. I always ask for a copy of the original studies perform on my children, I ask for written summaries/notes of visits. Sometimes, because of my own stress I would get things mixed up or forget what the dr. said, so copies and taking notes helped. I’m not afraid to ask hard questions, however, I’m never prepared to understand some of the answers. I’ve given myself permission to feel.  |
~Misty, July 2009 |
My husband and I were anxious to know information. Of all things, I’m a teacher and I teach child development to pregnant teens, or other High School students interested in child care. My husband is also a teacher. My children have no other illnesses aside CHD. We already have a daughter with CHD who was 3 years at the time, and we were assured by our OB about how rare the repetition of the disease would be, and that “God would only place on us what we could bare”–that seemed like a cliche we heard repeated on a weekly basis from friends and acquaintances. I remember we brought both our moms to the appt. and the dr. gently confirmed our fears. He quickly excused himself from the room to take a call and give us some privacy. I remember just wilting in my husband’s strong embrace. We all sobbed. The words are hard for us to take because we didn’t have the blessing of not knowing what to expect. Lauren, our oldest has had a tough climb out of infancy and we’ve felt like “we’ve paid our due.” I felt powerless, and ignorant. I was ignorant of the severity of the defects, and I felt like all of the emotional energy was immediately taken from me and I wondered if I would be strong enough to go through this journey again.