| Welcome to: Josiah's Heart Page Josiah (God heals/Fire of God) David (Beloved) |
| Josiah David Johnson was born early on Friday morning, June 28th 1991, at 1:10 am. He weighed 9 lbs 9 oz, and was 21 and 3/4 inches long. He seemed perfect, until his umbilical cord was cut. We would soon learn that our son had a long road ahead of him. |
| Before the Birth: When I found out I was pregnant I prayed, "Lord, I ask that this child would be filled with the Holy Spirit from my womb, just as John the Baptist was filled from his mothers womb." At about 6 weeks gestation I came down with the flu and bronchitis. We were told later that might have been what caused Josiah's CHD. One other cause may be my hypothyroidism. Apparently my immune system may have attacked his heart. Approximately six weeks before Josiah was born I attended a Christian seminar. The leader of the seminar, after the message, began to pray for those who had attended. After some time she walked over to me and began to pray. As she prayed she began to prophesy: "He will be filled with the Holy Spirit even from the womb...he will not take strong drink or drugs...he will lead the hearts of the Fathers to the children, and the hearts of the Childern to the fathers...he will move in the spirit of Elijah. |
| After observing him for a week (his second week) it was decided on a Saturday morning that he was in need of emergency surgery. The collateral vein feeding his left lung was too large, it was flooding his lung with high volume and high pressure blood. This was causing damage to his lungs and his heart. So that morning Dean and I waited for four hours as they opened our son's chest and placed a "rubber band" around the large left collateral vein. The original size was 5 mm. They reduced it to about 3 mm. It was easy to see after the surgery that he was doing much better. He looked like a new baby. Soon after they let us in to see him , the right side of his face turned beet red. The left side was white. The surgeon could not explain this, but we found later on that it was probably "sympathetic nerve" damage. After another week of observation, 21 days total, we brought him home. He was on Lasix, Aldactone, and Digoxin. When he was diagnosed we were told that Josiah had "Persistant Truncus Arteriousus Type IV". Later we were told that this was the "antiquated term" for the disease. It is now refered to as Tetralogy of Fallot with Pulmonary Atresia and a Large VSD, and Multiple Aorticopulmonary Collateral Arteries". He is, after four surgeries, corrected. He now has developed Pulmonary Stenosis at the base of his RV to PA conduit, Aortic Insufficiency, Pulmonary Insufficiency, and Mitral Valve, and Tricuspid Valve Regurge. He also has right hemidiaphragm paralysis and a Right Bundle Branch Block. He is now 10 years old and a happy guy. He faces more surgery in the future, but hopefully we will be able to put it off for a few years. Check back later for updates and stories of Josiah's other three surgeries. Thanks for reading our story, and God's richest blessings to your and your family! |
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| Josiah's Birth: June 28, 1991 |
| My preganacy was pretty uneventful. We went to the hospital at 7:00 am on June 27, 1991. The doctor broke my water to induce my labor, but after eight hours it had not progressed. So reluctanly I allowed them to induce using Pitocin, and had an epidural done. After that my labor progessed fairly quickly. We were encouraged that the nurse kept commenting that the baby's heart seemed very strong, and that its heartbeat was very regular. (Incidentally, that night our church was meeting as usual for kinship, a kind of bible study/worship time. While I was in labor, one of the men in the group who had a prophetic gift spoke this word, before Josiah was born. He said, "This is a chlid obtained at a high price." I believe he spoke of the great sacrifices that we and other families make when their child is born with a serious disability. We would have to pour our lives into him to keep him alive. I had also, early in my pregnancy, felt that there was something wrong with the baby. I prayed, "Lord, I don't care what is wrong with this baby, I will take care of it, no matter what it takes. Just let it live.") I only pushed for about 15 min. when the OB said to stop pushing. I was not aware at the time, but apparently the baby's umbilical cord was wrapped around his neck. Very smoothly and confidently he unwrapped the cord, and within a few minutes Josiah was born. We were excited to find out that he was a boy. I kept telling his father, "Its a boy! Its a boy!", but he only stared in disbelief. Then the OB asked Dean if he wanted to cut the umbilical cord. As he had done with our daughters, he cut Josiah's cord. Again, everything seemed perfect, and unbelieveable. Within a few seconds of cutting the cord our lives changed forever.. |
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| The doctor said, "The baby is not breathing." (though he was obviously alive, moving and thrashing about). He called the nurses to take the baby to the warming table to bag him (assist in breathing). I said to Dean, "Call Dick and Martha!", our pastor and his wife. They began to pray for our son's life. It was four minutes before he would breathe his first spontaneous respirations. They wrapped him in a blanket and brought him over and said to me, "Kiss him." So I did (We made eye contact. His eyes were so sad and he looked very frightened, and seemed to understand the moment) The nurses wisked him off to NICU. Again the nurses said, "At least his heart seems very strong and regular." I would not see him again for six hours. Those hours were some of the longest and loneliest hours of my life. Dean had gone to get coffee and had stayed away with a friend who ministered to him. I was alone with my fears and unable to get out of bed to find out if my baby was okay. I was so afraid, and grieved as though the baby were dead. Doctors and nurses came in and out, but with little information as to what was wrong with my baby. They were performing test after test. Finally, after six lonely, frightening hours the neonatologist came in to speak to me. He told me that Josiah had somehow developed pneumonia, and that he should be able to come home in about five days. I was then taken in to see him. He was lying on the warmer with IV's and wires, and a plastic hood that served as an oxygen tent. He was a big baby and the hood barely fit over his head. He was sucking on the side of it for comfort. I could not pick him up and comfort him. I could not nurse him. All I could do was sit by his bed and touch and talk to him. |
| After about 36 hours he came off the oxygen and was saturating at about 99%(THAT'S THE AMOUNT OF OXYGEN THAT IS GETTING INTO THE BLOOD). The doctors still maintained that he had pneumonia. On Monday, July 1 we were told he had a heart murmur, but not to worry, it was probably innocent. They wanted to check it to make sure, so they ordered an echocardiogram. The results were that he had a very large VSD (hole in the ventricular septum), and that they could not visualise the pulmonary artery. When the cardiologist came in he asked me what I had been told. I said to him that I was told that he might have a minor heart defect. Well, to my suprise he said, "Yes, in fact it is a very serious heart defect." As he described to me the type of defect that he thought Josiah had, the tears ran down my face and I was overwhelmed with fear and grief. He further explained that he wanted to do a heart cath (angiogram) to make sure of the diagnosis. Of course I agreed to the procedure. He warned me of the risks, but there was no question whether or not we would have it had done. I called Dean, his father, and he came in immediately. After the cath they led Dean and I to the dreaded parent conference room. There the cardiologist, Dr. I. Hunter Crittenden, explained that the results of the cath confirmed his earlier suspicians. He explained that Josiah was born without a pulmonary artery, and that he had an enlarged aorta that had several collateral veins leading to his lungs, serving as pulmonary blood flow. He also said that Josiah had a very large VSD (ventricular septal defect) and a right aortic arch. Our first question was, "Can this be fixed, or will he require a transplant?" To our great relief, we were told it could be repaired, and that it would be achieved in a series of surgeries. The plan at the time was to manage it using heart medications, Lasix, Aldactone, and Digoxin. They hoped he would stablize and that he would be able to wait unit he was older to have the surgery so that his collaterals could grow, and he would have a better chance of surviving the surgery.. They would observe him in the hospital for a time. |
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| Josiah nurses strongly for the first time since he was born...in this picture he's about one week old. |
| Josiah burping:-) |
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| Day 12, the day before surgery. Josiah is no longer able to nurse due to congestive heart failure/respiratory failure. The next day he has emergency surgery. Notice the juandice? He was at a level of 16, and under the lights daily. This was due to liver failure, secondary to chf. |
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| Daniel 6:16b The king said to Daniel, "May your God, whom you serve continually, rescue you." |
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| Tetralogy of Fallot with Pulmonary Atresia, Large Ventricular Septal Defect (VSD),Multiple Aorticopulmonary Collateral Arteries (MAPCAs), Right Sided Aortic Arch, Dialated Aorta |
| Each picture is linked to a page with other pictures of Josiah, in order by age.. At the bottom of each page is a button that will take you to the next page/age. There are also some stories about certain issues in his life at each stage in his development, including his fight with RSV. |
| August 1991 2 months |
| CHD Awareness Day 2001 age 9 |
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| Click on Josiah's Teddy to read my Surgery Journal-Memories of Josiah's first surgery at 13 days. |
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| New Pictures!!! Click here |