Thursday, September 21, 2006

I found out we were expecting our second child on our seventh wedding anniversary. I surprised my husband, Brent, with a pregnancy test stick and a “new father” card at our favorite restaurant later that evening. It was the beginning of what would be one of the most frightening and most fulfilling journeys we’d ever taken.

Sydnie Lyn Smith arrived on May 29, 2004, by cesarean section screaming and crying and was wisped away to an adjoining room with the nurse and my husband. A few minutes later, they appeared again. Brent was holding her and they brought her over to me so I could see her. She was so small and looked so much like her older sister, Jenna. We compared ears, eyes, chin, nose, and lips and we were so thankful she was healthy and had all fingers and toes. The nurse came and told Brent they’d have to leave so the doctor could finish up with me and they would get Sydnie to the nursery so they could get her ready to join us in the recovery room.

After several hours of waiting for Sydnie to arrive from the nursery, my mother in law began to go back and forth to the nurses’ station asking why they hadn’t brought her out yet. She was told that since Sydnie arrived via cesarean, she needed a bit of oxygen and would be with mom and dad shortly. With no worries, my husband and mother in law left my room to go get lunch and I waited anxiously to see my baby girl. While they were at the cafeteria, a woman entered my room and asked if I was Mrs. Shannon Smith. I said, “Yes, I am” and she asked where my family and husband was. I told her they had gone downstairs to get lunch.

That was the end of my blissful day. At that very moment, my whole life would change instantly. I remember it like it was yesterday. I remember the way she looked… her small thin stature, those glasses that looked like they were at least eight or nine years old, the lack of make-up on her face, and her very short hair.

I began to sob and cry. I remember sounds coming out of my throat that I’d never heard before. She was talking and it seemed like time had stopped at that very moment. I thought to myself, “This isn’t happening. I must be dreaming, yes, I’m dreaming.” I looked away from her briefly and looked out of my hospital room window and back at her. That’s when I realized I wasn’t dreaming, she was really there and really saying those awful things about my perfect baby.

“You have a very sick baby, Mrs. Smith. If we don’t get your ok to transfer her to UNC Children’s Hospital right now, she won’t make it. She’s a very sick baby.” She said. Then, she realized through all of my crying and screaming that I hadn’t realized my baby was sick before she’d told me. “Oh, you didn’t know did you?” She replied. “No” I said. About that time a nurse came running into my room and asked what was wrong. The doctor told her she was telling me that my baby would need transferring to a hospital equipped with a Pediatric Heart center that was better suited for my baby’s needs. The nurse then came to my aid and held my hand. She asked me where my husband was and somehow I managed to tell her. She then turned to the doctor and told her she should’ve waited to break the news with me after my husband had returned to the room. The doctor immediately stared at the file in her hands and then turned and walked out of the room. My nurse called for someone to page my husband and mother in law back to my room and I had the great pleasure of telling him that our baby was critically ill.

When they arrived back at my room, I was a total wreck. I could hardly speak and the nurse had to help tell them what was going on. My mother in law cried and my husband went silent. He quick speaking almost immediately and that lasted for hours. He was completely shocked and I could tell he was afraid.

Hours later, they brought Sydnie into the room for us to see her before they transported her to UNC. By then, my father in law was with us and my husband had called my mother, who was at home taking care of our older daughter, and broke the news to her. Brent and his father followed the ambulance to UNC and to be with Sydnie. They admitted her and immediately began testing her for diagnosis’ and treatment options.

Within two days, it was discovered that Sydnie suffered from Hypoplastic Right Heart Syndrome, Pulmonary Stenosis, and Tricuspid Stenosis. She would need open heart surgery as soon as possible. I was still in the hospital recovering from my c-section and Brent was spending as much time as he could with Sydnie in the ICU unit. He called me often with updates and he took pictures of her and drove from UNC to the hospital I was located at (Rex) with them so I could see my little girl.

I couldn’t be with her for her first Balloon Valvuoplasty on June 3, 2004, nor her first open heart surgery (BT Shunt) on June 5, 2004. I had pulled several stitches loose and was on complete bed rest for several days, due to my intense stubbornness to try to get to my baby. We met with a team of doctors in a small, room around a large table. Everyone was staring at us and telling us how sick our baby was. We were shown diagrams, photocopies, drawings, and interrogated about how she’d gotten her condition. We were told her heart defects were a “fluke”. When I finally got to see Sydnie, I lost it in her ICU room. There were tubes coming from all over her tiny body. She was so small, but so swollen and the machines that surrounded her were loud and threatening. She looked like she was dead. I can’t explain it any other way. It was horrifying to see her that way and at the same time, it was a blessing that I “could” see her at all.

It was so hard to go home from the hospital without my baby. When I was released and taken home, I broke down after walking into my home and seeing my older daughter, my mother, and all of Sydnie’s things. I remember my oldest daughter, who was two and a half years old at the time, telling my mother that “mommy’s sad and don’t cry mommy”. From that day on, Brent and I took daily trips to be with Sydnie until she was moved to the step down unit (which is a good thing), where we had to be with her 24/7 until she was discharge. In all, Sydnie was hospitalized for 13 days. We were sent home with a folder full of paperwork, technical terms, feeding instructions, contact numbers, and heart medications.

We were assigned to a Pediatric Cardiologist, who would oversee Sydnie’s progress and decide when she’d need her next surgery. At about five months old, we’d noticed that she’d become clammy and pale at times and went in to have a routine check-up. During her appointment, the doctor discovered that the BT Shunt was no longer working for her and that we’d need to do another Balloon Valvuoplasty to see if the blockage could be opened or if she’d need the second of three surgeries that were required for Hypoplastic Right Heart children.

On October 14, 2004, Sydnie was admitted for her second Balloon Valvuoplasty and it was discovered that she’d need the second surgery as soon as possible. We were scheduled that day to come back in for the Glenn Procedure on November 2, 2004.

We made arrangements with the Ronald McDonald house to stay with them while Sydnie was at UNC recovering from her second open heart surgery. We went in for testing on November 1, 2004 and on November 2, 2004; we handed her over to a nurse and cried as she disappeared down a hallway to the operating room. Hours and hours passed and Brent and I couldn’t stay in one place. Our preacher came to visit with us and ask how the operation was going and told us that there were so many people praying for Sydnie. It really touched us to have someone just show up for support. We wondered the halls of the hospital. We cried at times and neither of us could think of anything else but Sydnie. Finally, we received word that the surgery was over and that Sydnie was on her way to the PICU to recover. An hour later, her surgeon walked in to give us the good news that she was doing fine and did well during the surgery. I was so ecstatic, I hugged him and contemplated kissing him, but I didn’t. At that moment, he was God to us. He’d brought my daughter back to life, not once, but twice in five months and loved him for that.

Her stay was shorter this time… seven days. After her recovery, she was tested and accepted into our state’s children’s wellness program and began physical therapy once a week to help her with her sitting, crawling, and walking abilities. By the time her physical therapy was at an end, she was almost walking. It was amazing to see the progress she’d made over those six or seven months of therapy. She amazed us each day with her new tricks and her determination.

She has brought our family closer and I believe she saved our marriage. My husband totally took charge from the moment he found out about Sydnie’s condition and became a much better father from that moment on. Having my girls gave me the confidence and strength to believe in myself and stand up for myself. I am so much stronger now that I have them and after going through all of the turmoil with Sydnie, I am more aware of who I am as a person. I’ve found friends online and through a local support group that helps us stay grounded and offer support when other family and friends can’t.

Since having her second surgery, Sydnie has been doing well. She has suffered from Reflux since birth and has had a seizure that required tests and a visit to the hospital, but other than that, we are blessed to have no complications as of yet with her heart condition. We don’t know when or if she’ll need the third surgery. We take it day by day and know that each day is a blessing with our children.

Sydnie Lyn arrived kicking and screaming on May 29, 2004, and has not stopped since that day. She is a fighter… you can see it in her eyes. Her spirit is so strong and vivacious. Her determination is witnessed each and every day by us and by everyone she’s around.

These children deserve so much out of life. They’ve been through such traumatic experiences and are worthy of everything life has to offer. Those of us with children born with Congenital Heart Defects undergo so much stress and apprehension about what the future holds. Our lives are turned upside down and for those of us with other children, we have to find temporary homes with family and friends for them, while we care for to our sick child’s needs. When and if our child comes home from the hospital, we have piles and piles of medical bills to pay. Hospitals, doctors offices, collection agencies, and letter after letter consume our lives with demands to pay up or else. In a sense, we’ve been shattered… as a family and as individuals. We all experience it the same, but individually, we react and handle it differently.

For me, it’s like a robbery or a rape of my heart. Someone just reached in and tore my heart into a thousand pieces and I’m left with the task of finding, and then trying to piece it all back together. Of course, I’ll never get it back together exactly as it was before it was broken, so cracks and crevasses still remain.

This is such an important issue for everyone, not just for those of us who are already fighting in the trenches. Heart Defects account for more than 32,000 births in the United States, yearly. They are also the leading cause of birth defect related deaths. More research and awareness for this birth defect need to occur. So many lives are saved with the advances and technology that exists today, but there are also many lives that aren’t saved. With new studies, collaboration between medical facilities, DNA testing, possible stem cell research, and awareness campaigns, much more progress can be made in this area and more children could be saved.


Shannon Arnold-Smith

No comments:

Saving Little Hearts Videos