SOME MOTHERS GET BABIES WITH SOMETHING MORE... 

My friend is expecting her first child. People keep asking what she wants.  She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know youčre ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Lori Borgman is a newspaper columnist and author. You can find her at: www.loriborgman.com

Dr. Heart to Heart would love to hear your questions, please e-mail newsletter@itsmyheat.org.

Madeline Sadie Thies

Born September 4, 2006

Transposition of the Greater Arteries (TGA), ASD, VSD and Pulmonary Hypertension

 
Story told by Kimberly Thies, Sadie's Mom

 
In January of 2006, my husband's grandmother, Nanny, was close to death. She was 96, and had lived a wonderfully full life. At the same time, my husband and I discovered that I was pregnant. I went in for my 8-week appointment, but the ultrasound technician couldn't find a heartbeat. Two weeks later I came back, and a faint heartbeat was found, but was irregular. I was told to be prepared because I may have a miscarriage. I'd been through this painful loss before and was devastated. My husband, Jason, and I decided not to tell our family, as the pain of the impending loss of his grandmother was too much for his parents as it was.

A few days before Nanny passed away, she began common behaviors that occur prior to death in many people - she picked at things, saw loved ones who had already passed standing beside her, talked about how beautiful things were, and that she was ready to go. One of the last days of her life, however, she said something astounding.

Jason went to visit his grandmother the day that I had the 10-week ultrasound. The family was talking about a weird thing Nanny had been saying all day, "Tell Grandson. Name Baby." Jason overheard this background conversation as he sat with his grandmother, and as she said a few of her very last words on this earth - she looked at him and said "I love you so." Jason had to leave the room, and broke into sobs. His mother came to comfort him, and he told her she didn't understand. He told her that I was pregnant, but we thought it may end in miscarriage. He called me moments later and told me what had happened, and I cried with him. I knew in my heart, at that moment, that this baby was going to make it.

Two days later I went to see Nanny for the last time. I leaned in close to her and said, "Nanny, you know about the baby, don't you?" Nanny's eyes crinkled into a smile and her eyebrows rose. She had been the first person we told about our first daughter, Katie, and I teased her that she once again was the first to know, even though I'd never told her. Tears slipped down my face as I held her hand and stroked her hair. I talked about what she'd meant to me, how that, despite the fact that we weren't related she'd been a grandmother that I'd always dreamed of. I left with a promise to her we would work especially hard to pick the perfect name - that if it were a boy we may name it after her late husband, if it were a girl, after Nanny herself. She crinkled her nose to this - her name was Sadie Esther, and she hated both names. 

Time passed and the pregnancy progressed. I had a few scares - low amniotic fluids, multiple ultrasounds trying to map out the heart. They told me she was lying at a difficult angle on almost every ultrasound I had. Never was I really worried, though, because Nanny had told us to name the baby. I felt confident that the baby was doing well. She was much more active than her sister, moving constantly and keeping me from sleeping at night as she twirled in my belly.

I'll never forget Labor Day 2006. That day I woke up feeling ill, and thought... hoped... that maybe it was due to the impending arrival of the newest addition to our family. I got up and fixed breakfast for Katie, who was almost four and couldn't wait to hold her new baby sister. Contractions started soon after I got up, but I didn't want to spend the whole day in the hospital, so decided to wait until they were regular and close together before going in.

I was starting to feel the need to push, and then told Jason the contractions were less than two minutes apart... we needed to get back to the hospital FAST.

Jason drove slowly through traffic while I concentrated on keeping this new little girl inside long enough to get to the hospital. We arrived at the hospital just in time - 17 minutes later I gave birth. Our first daughter had been born with the umbilical cord around her neck and had to be revived for several minutes. When this newest daughter was born I waited breathlessly for the new baby to cry. She didn't cry - she screamed the minute she entered the world. Tears sprang into my eyes as I thought, "Thank God, she's OK." 

The baby was placed on my belly and I saw a head full of dark hair, an impossibly round little head and a mouth just like her sister's. Thirty seconds later she was whisked away to be suctioned. I waited and watched as the nurses hovered over her. I was in shock, and marveled to myself how many nurses were there, working on her. And my mind began to tell me something was wrong, but my heart refused to believe it just yet. I asked the nurses what was wrong after about five minutes, and they said they had to take her to the nursery and give her oxygen. I watched them wheel her away. We were too flustered to have a camera in there with us (our car was still in the emergency lane), I was too tired to think clearly. We had not gotten a picture of our newborn.

Time ticked tediously by. The doctor and nurses finished up with me and my husband, Jason, went to move our vehicle to a parking spot. I was all alone in the delivery room, without a baby, and felt a little nudge of anxiety. Then a pang of loneliness. Then a twinge of what I would later recognize all to well as a fear I'd never imagined. I realized that I had no idea what our little girl weighed, what time she was born, or any of her vitals. We had not even named her yet.

Jason came back to the room and we waited. We had been unable to settle on a name for our little girl, wanting to honor Nanny, but unsure how. Finally, we settled on Madeline Sadie as we waited. We thought we'd call her Maddie. My parents arrived with a very excited Katie, yet we still had not seen the new baby.

Then, the door finally opened and the nurse and a man I'd never seen before walked in. He told me he thought that Sadie was having difficulty with her lungs and would need to be transferred to a facility that had a NICU.  The rural hospital we were at did not have the equipment she needed. I asked if we could see her. He told me no, but that Jason could. I was devastated, and angry, but too tired and shocked to fight his decision.

Thankfully, my nurse was not shocked or tired, and left the room. She came back with a wheelchair and said I could go too. We entered the nursery to a fluster of activity. The doctor's eyebrows shot up when he saw me enter, but he didn't say a word as the nurse wheeled me up to my baby. It was shocking to see her little body connected to that enormous-looking ventilator. She took my finger when I held it out against her tiny balled-up fist and held on tightly. I stroked her hair, whispered in her ear and was torn apart to see her cry into a ventilator for the first time, no sound escaping. The first of millions of tears to come slipped from my eye. The severity of the situation began to hit home. The doctor asked us to leave.

Two more hours passed. Finally, the door opened again. The doctor entered and told me that he'd called in a pulmonologist as the "situation had escalated." Unfortunately, the pulmonologist was nowhere nearby, and so a cardiologist who was in the vicinity came. This, he explained, was a stroke of luck, because our daughter had a heart defect. He went on to draw a picture of a heart on a napkin with a shaky hand, knocking over my drink during his nervous presentation. I struggled to recall my biology lessons of years past as he sped through the diagnosis. He told me to sit tight, that a cardiologist would be in shortly.

Another hour passed before the cardiologist came in to talk to us. He was very calm, had complete confidence in his presentation, and had a soothing effect on my rapidly defraying nerves. He explained that our daughter had Transposition of the Greater Arteries, as well as a few holes in her heart. He assured me that this heart defect was one of the better ones to have - because it had a "fix." He asked if I had questions. I asked if she'd have a scar, too scared to ask or find the words to question if it could be done laproscopically. He told me it would have to be open-heart surgery, and I felt like I would faint. It struck me that a total stranger would hold my tiny daughter's heart in his or her hands and try to repair it. As the cardiologist left the room he told me I'd see the baby as they took her out. 

A space-age looking incubator was wheeled into my room, with portholes on the side. Inside my tiny newborn looked blue and cold, lines running everywhere, machines breathing for her, pumping her chest impossibly high with air and blood spotting bandages where lines had been quickly inserted. My heart fell through the floor. I touched her hand one more time and she was whisked away, leaving me behind.

I went in the restroom and broke into quiet sobs. I'm not a crier, and used to pride myself on my external strength, but this was just too much for me. I'd been in some intense situations before. But nothing could prepare me for this. My nurse came in to check on me and held me while I wept as I had not done since I was a child. Finally, I pulled myself together and headed back to my hospital bed to wait. I didn't sleep. I cried. I prayed. I asked my ancestors to surround the baby, to keep her alive. I asked Nanny to keep her company and to calm her fears. Jason and I talked, and we agreed that our daughter should be called "Sadie" - she would have her grandmother's strong name, and we hoped and prayed, her lifespan.

That night Sadie almost lost her life several times. Her oxygen saturations were at 30% when she arrived at the PICU. She underwent a cardiac catheterization that night to save her life. When we arrived the next morning she was in bad shape. Her body was extremely swollen, and I didn't recognize her at all. She was still not very well cleaned from birth. She was struggling, and monitors were blinking, bells were ringing and the nurse ran circles around us as she tried to stabilize her and explain what had happened since she'd been in the hospital. We left to check into the hotel once she stabilized a bit, as I had been told to stay off my feet.  I couldn't stand to be there, so I left Jason to rest and went back to the PICU. Nothing could have prepared me for that evening. 

Two times I sat alone, on the bench/bed, bundled into a protective ball as I watched up to 10 people surrounding my tiny daughter, pondering options, adding new lines, changing dosages, bagging her. I watched her code and be resuscitated. I did not say a word.  I did not want to interfere, but sat mesmerized and in shock, unable to process what was happening. Finally, once stabilized again, an attending came to sit beside me and asked if I understood what was happening. Unfortunately, I did. She explained that Sadie was one of the sickest TGA patients they'd ever seen, and the next day or two would indicate if she could survive this. She said there may be brain damage, organ damage and other problems due to the low oxygen levels. I rocked gently and listened, asked questions, and took notes. Then she left. Thankfully, none of her predictions came true.

I won't go into the details of life in the PICU, the trauma of separation from our oldest daughter during the crisis, the nights spent holding her hand, the days spent praying for a miracle. Unfortunately, you, too, have likely been down that path, so you know it as well, if not better than I do. Thankfully, Sadie inherited her great-grandmother's feisty spirit, along with her name, which helped her survive the worst of those days. Though our medical struggles with her are likely far from over, for now she is a happy and healthy 20 month old... precocious, frightfully daring and incurably curious about the world around her. 

Nanny's final words were more than a prophecy about our daughter. They were a comfort and strength to me in he darkest of times. Whenever I felt helpless and hopeless, I would think of Nanny's departing words and they would lift me. Though it may seem a bit crazy, I can't help but believe she knew that Sadie was coming. Nanny's final gift to me was the comfort derived from this knowledge... that it was so important to name Sadie because she was going to survive. In the darkest hours I could surround myself with that thought like a snuggly down blanket on cold winter's night, and I felt peace and comfort. 

Thank you, Nanny. I miss you.

CarePage: SadiesHeart

 
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