Tesia’s story – How it all began until now.
Tesia Nicole Oszakiewski was born on December 28, 1999 at 9:25 pm, at Casa Grande Regional Medical Center, located in Casa Grande, Arizona. She weighed in at 6lb, 5oz, and was 18.5 inches long. Quite a healthy looking baby, her pediatrician, and the nurses said she was in perfect health. After a couple of days, one nurse noticed that the bottoms of her feet were still blue. This nurse acted fast, saying that this was not normal, and it needed to be checked out. The pediatrician was called back, and he said he now found a heart murmur. He decided to have her flown by helicopter to Desert Samaritan Hospital in Mesa, AZ. Once at Desert Samaritan Hospital, the Neonatal Specialist examined her, and determined that she didn’t have a heart murmur. Instead she had three different heart anomalies: dextrocardia, atrial septal defect, and transposition of the great arteries. I will be more specific in the paragraphs below:
Dextrocardia is a condition involving the placement of the heart in the chest. Normally, your heart sits in the left side of your chest, with the apex (bottom) pointing towards your left foot. In patients with dextrocardia, the heart sits in the right side of the chest, with the apex pointing towards their right foot. An exact mirror image. This poses no life threat in itself, and people who have this go on to show no problems with their heart at all.
Atrial Septal Defect (ASD) is a congenital disorder where an atrium (upper chamber of the heart) has a hole in it. This usually closes itself up with time and sometimes medication. In some cases, it requires surgery. Some babies are born with 5, 7 or 10 or more holes in their heart! Of course, these babies require surgery, but they recover just fine.
However, Transposition of the Great Arteries (TGA) is different. A baby with TGA has their two main arteries connecting the heart with the lungs switched (transposed). In other words, their heart pumps oxygen-rich blood from the lungs back to the lungs, and oxygen-poor blood from the body back to the body again! The baby never gets a decent oxygen supply. This requires surgery, and the chances of survival after surgery are around 40%. If the baby survives, they stand a 95% chance of leading normal lives!
Now, back to Tesia. With her having TGA, the ASD actually helped her survive, because the hole allowed some oxygen-rich blood to leak back into her circulatory system. Once diagnosed at Desert Samaritan, the doctors there put her on a drug called PGE, or prostaglandin-E. This drug causes the Patent Ductus Arteriosus (PDA) to reopen. For those of us non-physicians (me), the PDA is a vessel that is open while the baby is still in the womb. It connects the two great arteries together, and allows the blood to mix completely. However, since we don’t breathe in the womb, this drug also causes the baby to stop breathing. Therefore, she was placed on a breathing machine. She was then flown to Phoenix Children’s Hospital for surgery. Once she arrived at PCH, she was taken to the Pediatric Critical Care Unit (PCCU), for monitoring and medication. After the doctors and nurses could stabilize her, she was scheduled for surgery. People everywhere were praying for her: churches, places where we worked, family, neighbors, friends, total strangers we met at the hospital, even the hospital staff! Tesia was now 2 weeks old, and going into the OR for her open-heart surgery. We waited in the waiting room for 14 hours, while the OR staff would occasionally come out to tell us what was going on. Each time they came out, they looked worse and worse. In the end, one of the cardiologists came out and said the surgery was a success, but her little heart just can’t handle it. Her left ventricle (the most powerful one) was weak, and not performing like it should be. They prepared us for the worst, and said she’d have to be put on a special heart-lung bypass machine called ECMO (Extra Corporeal Membrane Oxygenation). It’s a machine that takes some of the burden off of the heart by oxygenating the blood for it. The downfall of this is, roughly 40% of babies placed on ECMO survive. With the other 60%, their heart never takes over again.
After being prepared for the worst, we went to visit our baby Tesia. She was on 13 different medications, all being fed by I.V., her chest was still open, with her heart beating very visibly, the ECMO circuit was moving blood for her, she was on 4 heart medications alone, the breathing machine, a chest tube, and her monitors. Needless to say, it’s a sight to bring the toughest, strongest man to his knees in tears. We couldn’t do anything but cry. Then, a young man stood behind us, looked inside the room, touched my shoulder, and said “Hang in there.” The doctors and nurses kept telling us she’s a VERY sick baby. They had to wait and see if her little heart could take over again soon. The doctor gave her 3-5 days to live…
On the third day, her heart started to regain strength, and the doctor lowered the ECMO circuit to see if she was truly getting better. Sure enough, her heart took over. She was finally taken off the ECMO circuit, and her heart was beating just fine. Her blood pressure was within normal limits, her heart rate was a little irregular, which was treated with medication. She was still on the ventilator, though, in case the surgeon had to go back into the chest again.
About a week later, the surgeon closed her chest, and removed the chest tube. He said he changed his feelings towards the situation, and he feels a whole lot better now. He is much more confident in her survival now. She received further testing, and through many echocardiograms, the cardiologists were able to find a blood clot in her Superior Vena Cava. This is the largest vein in the body, which carries all of the body’s oxygen poor blood back to the heart. They successfully dissolved the clot, and determined she now had another problem, called chylothorax. This is a condition where the digestive system, now receiving an ample supply of oxygen rich blood, gets over-zealous, and doesn’t process fats the baby eats. All of the fat instead leaks out around the lungs, causing difficulty breathing. This is treated several different ways. Our doctor’s method was to use diuretics, which dry out the body’s tissues, and a formula called Tolerex, which has zero fat in it. It is purely nutrients.
After another week or so, the surgeon determined she needed to go home, even though there was still some fluid left. After 6 chest tubes, and a constant flow of the diuretics, it was time to try and live a “normal” life. He discharged her, and she came home. The next week, she went to her cardiologist’s follow-up appointment, and he found her having much difficulty breathing. He sent her back home on oxygen to help her oxygen saturation in the blood stay high. He wanted to see her in a week. When we returned the next week, her chest x-ray was worse, and she was breathing worse. We were readmitted to the hospital again. Once in, several cardiologists tried to pinpoint the cause of her labored breathing, even going as far as to diagnose her with asthma. Finally, a pediatric pulmonologist ordered a CT scan be done to determine what kind of fluid it is and exactly where it is. He found her entire right lung was covered with small loculated (encapsulated) pockets of an unknown fluid, which had caused 50% of her lung to collapse. Her left lung was collpased roughly 20%, but still working. The heart surgeon was furious that no one caught this earlier, and scheduled her for surgery to remove the fluid. It took him about 20 minutes in surgery to remove the fluid, check for any leakage, and get her back to her room. She stayed on the ventilator overnight to assist in the opening up of her little lung, and she started breathing much better. He ordered she start on a less intense formula called Portagen, which has some fat, but not much. Enough to supply adequate nutrition to her body for now. He removed all medications, and placed her on aspirin for her heart, and Lasix for a short time. Lasix is a common diuretic, just to make sure fluid doesn’t build up in her tissues again.
We went back home, and four days later, went to visit the cardiologist again. He looked at her x-rays, and ordered her to be readmitted to the hospital again. The fluid had reaccumulated, and was causing her diaphragm to be inverted and push up on the bottom of her lungs. This time, she was intubated within a few days, and scheduled for another chest surgery. This time, the surgeon was going to accomplish several things: he would remove the fluid, tie off the duct causing the leak, and “rough-up” the surface of her lungs to cause them to scar, and remove the potential space where the fluid was collecting in the past. She had her surgery, and it went well. Within a week, her chest tubes were removed, and all was well. The fluid had stopped reaccumulating! However, another problem arose. Her body became so used to having the ventilator, that she became dependent on it. Whenever the doctors try to wean her off, or extubate, she stops breathing and her lungs swell up, like an asthma attack. But, if she stays intubated longer than 3 weeks, her vocal cords can atrophy, which means she’d never be able to talk. The surgeon and doctors recommended a tracheostomy. This is a small hole cut in the neck, bypassing the vocal cords and allowing her to breathe using the ventilator as long as she needs it. The yellow tube you see in her nose is her feeding tube. She won’t need this, it’s just there to help feed her shortly after surgery. She’ll come home on the ventilator, and need special care for anywhere from 3 months to a year or more. It all depends on how quickly her lungs heal themselves. Fortunately, she can start eating regular formula by mouth. With the trach in place, she can live as normal a life as possible, growing, playing, eating, until her lungs heal up enough to have it removed.
Tesia came home on June 21, 2000 with her ventilator. Within a week of coming home, she had already begun to gain weight and progress in her development, including smiling. Each day was a tremendous improvement from her condition and behavior in the hospital. She began taking a bottle by mouth without needing the rest of her food given by nasogastric tube. She would hold her bottle by herself. Her vision test came back with a perfect score, however, her hearing test showed that she could not hear at all in her right ear. After follow up testing, the ENT surgeon agreed that she would need tubes placed in her ears. Actually, the surgery is called a myringotomy, and small blue tubes are placed in the eardrum, so the fluid that builds up behind the eardrum can drain properly. When she got bigger, the tubes fell out by themselves. Tesia had special therapists come to the home each week to evaluate her development. As a comparison, when she was in the hospital, they said she had the development of a one month old baby when she was in fact 6 months old. After being home a little while we were told she would be one month behind in her development until about 2 years, because she was 4 weeks premature.
At age 17 she is now slightly delayed in only areas of behavioral and emotional development. She’s in all mainstreamed classes except math and reading, and her reading and vocabulary skills put her at the top of her class.