Early Days, Decisions and Diagnoses

The decision to use drastic measures to save a much-loved and much-wanted child is probably one of the most difficult decisions anyone could ever make. My husband and I were also faced with many agonizing decisions due to an extremely difficult conception (nine years of infertility) and pregnancy. I had in vitro fertilization, and spent the next 21 weeks bedridden or hospitalized because I was hemorrhaging the entire time, and leaking amniotic fluid about six weeks prior to his birth. Sammy was the only survivor of quads; the other three babies died early in the pregnancy which was the cause of the bleeding. I had been pregnant for almost 21 weeks (almost 23 weeks post last menstrual period) when the amniotic sac completely ruptured, I went into active labor, and what little amniotic fluid remained was gone. We did everything we could to stop delivery; I received high doses of IV Mag Sulfate. The doctors told us that normal protocol is to not try to stop delivery after complete loss of amniotic fluid, but they would in our case because of all of our efforts to get pregnant and keep our baby.

We were able to hold off delivery for three days, and I received the steroids. During that time we were trying to make the decision about whether or not to use drastic measures of medical intervention. The doctors told us that they probably wouldn't even try to save a baby so premature, but due to our history of infertility they would try if we so wished, and if it looked like the baby had a fighting chance.

My husband and I agonized over this decision. We desperately wanted this baby we had been trying so hard to have, but we also didn't want him to be a vegetable, and imprisioned in a body that wasn't able to function. This is what we told the doctors; it was a wait-and-see decision. When the labor was unstopable, I delivered my son in a room that was filled with medical personnel from the NICU. I remember the room being very quiet even though there were so many people there. There was no joy or anticipation on the face of anyone there. My husband and I didn't even get to see our son as he was immediately taken away to be lost from view by the bodies that were trying to save his life.

The entire NICU team was amazed at how big Samuel was. He had always measured large on his ultrasounds, often one or two weeks larger than he really was thanks to his genes. There was no doubt about his exact age, however, since we knew the exact minute he was conceived in a petri dish! There are many things I love about Steve, but I was never so glad that I married my 6'4" husband than when they exclaimed about my preemie "He's huge! He's huge!" Sammy was one and a half pounds and 11 and 3/4 inches long. He should have been less than a pound.

Sammy's apgar scores were remarkably high (4 and 6) which also surprised everyone. This news was so encouraging, and removed all doubt in our minds and the minds of the doctors about saving our baby. My mind cannot even begin to think of what it would have been like had not the original news been so amazingly optimistic.

The positive news and elation soon ended. By the afternoon, the doctors were telling us that they didn't expect Sammy to live through the day. They told us that they call the first twenty-four hours after a premature birth the "honeymoon" since the baby was relatively stable from being inside the mother. Our honeymoon only lasted a few hours; Sammy had crashed. The next few MONTHS were critical, and he fought for every minute of life. I am still amazed at how fragile and yet strong he was (and still is).

Samuel developed PIE (pulmonary interstitial emphysema), severe BPD (bronchopulmonary dysplasia), pneumothorax (collapsed lung) which required a chest tube, pulmonary edema, two Grade II IVH (intraventricular hemorrhage), transient PDA (patent ductus arteriosis), severe anemia and hypoalbuminemia, several severe candidal sepses which caused his platelets to crash from 300,000 to 6,000, multiple transfusions of blood and platelets (one of which was given by error that was CMV+, not irradiated or filtered), lumbar puncture for suspected meningitis, and an inguinal hernia. He was on a high frequency ventilator and then a traditional vent for almost two and a half months. He had terrible bradycardia (dramatic decrease in heartbeat) and apnea (failure to breath) episodes (often one every five minutes). He received IV nutrition called TPN for weeks until he was able to tolerate feedings of breastmilk by gavage. Once he was off of the vent we were the victim of HMO wars and were transferred by ambulance to our regional medical center where he received negligent care during our month-long stay.


Samuel came home several weeks before his due date weighing about three and a half pounds. He was on continuous flow oxygen through a nasal cannula. He was hooked up to a monitor that would alarm for any apnea, bradycardia or tachycardia. He was relatively stable for the first few weeks after coming home, but soon became infected with disseminated candidiasis. He was rehospitalized for almost two months. This led us to our discovery that he had a form of immunodeficiency called hypogammaglobulinemia. This was treated with intravenous amphotericin. They had to place a central thoracic catheter since they couldn't start any more I.V.'s and we had blown two PICC (peripherally inserted central catheter) lines. This picture shows one of the PICC lines that was placed in his scalp. His lungs were improving, and they discontinued continual oxygen during this hospitalization. Sammy continued to grow and eat well. I continued to breastfeed and then just pump until he was 21 months old. After full recovery from the Candida, Sammy had surgery to repair an inguinal hernia.

Samuel was isolated at home and received in-home physical therapy twice a week for his gross motor delays and a torticallis. I returned to work before his first birthday. He received in-home R.N. care because of his isolation and his central thoracic catheter. He was continually sick with upper respiratory infections and ear infections. He received several IVIG (intravenous immunoglobulins), which is an infusion of antibodies. When he turned two in October, we received wonderful news that his levels of antibodies had started to rise, but were still below low-normal range. This news was followed by several months of severe viral respiratory and ear infections, and fungal infections of his skin. His most recent blood tests show that he is making low to normal levels of antibodies. His central catheter was removed in April of 1998 after receiving this news.

Sammy is now three and a half years old. He is 38 pounds and 39 inches long. He is still having swallowing problems and is eating stage 3 baby food. Interestingly enough, he loves to eat graham crackers and corn chips! He is making progress and no longer needs to be seen by a speech therapist/swallowing specialist. He has only mild speech delays, and is amazing us everyday with the new sentences he is putting together. He can count to forty. He can recognize and identify both upper and lower case letters of the alphabet and is recognizing many words. Sammy has become quite the singer! He sings to himself quite often and it seems that "Jesus loves me" is one of his favorites! He can memorize songs much faster than his mommy and daddy can! He has been receiving Occupational Therapy twice a week since the beginning of 1999 to address his delays in fine motor and self-help skills.

MORE TO COME . . .

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COPYRIGHT 1998 Susan Warren. The original story, pictures, art, isolette cover pattern and tiny feet background contained in the web site are not to be copied which is prohibited by law.