Group B Strep: Our Story and The Importance of Testing

By Jane Sullivan - This article appeared in the Winter 2002 edition of MOST Magazine

While pregnant with my triplets, I read everything I could possibly get my hands on.  I do not recall more than a paragraph on Group B Strep, a bacteria found in many healthy adults, or testing for Moms before the birth of their babies.  It was a important paragraph I wish I had paid more attention to.

Our babies, Maura, Catherine and Joseph were born at 32 weeks gestation on August 11 2001 at Mercy Health Center in Laredo , Texas.  Catherine had a complete placental abruption and an emergency C-section was performed.  At no time during the pregnancy was I tested for Group B Strep.  I was not tested when I went into premature labor at 28 weeks, and I was not tested the day I delivered the triplets.  No one tested the babies either.  I was later told that testing is not done until the 37th weeks of pregnancy.  No one ever thought about it in the rush of all the other factors they were dealing with in a high-risk pregnancy.

Everything seemed to be going well, with the typical issues faced by parents of multiples, premature babies.  Our oldest triplet, Maura, was the strongest and as a result came home first after 3 weeks.  Joe and Catherine were expected to follow within the week.  Maura was home for two days when we received a phone call early in the morning.  I knew something was wrong when I saw the NICU number on the caller ID.  The nurse explained that in the middle of the night Catherine began showing signs or distress.  The initial thought of the neonatal doctor was that she was suffering from NIC and she called in a gastroenterologist, who immediately took Catherine off her G-tube and feedings and ordered her back to TPN's.  She was also placed on antibiotics.  It was several more days of various symptoms when the doctor tested Catherine for Group B Strep.  She tested positive for the bacteria.  We were, however, extremely fortunate that a spinal tap shoed that it had not progressed into her blood stream and spinal fluid.  She needed to complete ten days of IV antibiotics and then she would be able to join everyone at home.  She did not come home with Joseph, needing an additional week for her meds, but we felt blessed that it was caught in time and she would recover.  It was not until after she was home that I paused long enough to re-read the important paragraph that explained the seriousness of Group B Strep.  I was happy to have it behind us.

Thirteen days after Catherine came home she began to act strangely.  It was nothing I could really put a finger on, but she just didn't seem herself.  She was crying a lot and only seemed ok if she was being rocked.  As the evening progressed Catherine began running a slight fever, 99 degrees...not something I usually get upset over, but my mother's intuition kicked into overdrive.  I began watching her closely.

Catherine only took half of her feeding, and the words the doctor said a week before began echoing in my mind, "Sick babies don't eat."  I tried to convince myself that half her feeding was still eating, and yet I was still cautious.  My mother-in-law, who could see my uneasiness tried to calm me by suggesting that it was gas.  Catherine had passed gas and then finished the other half of her feeding an hour later, so I thought my mother-in-law was right...perhaps the gas was hurting her and making her feel full and all the rocking and being held close increased her temperature slightly.

Still wanting to be better safe than sorry, I phoned the doctor, but he was out of town for the night and had another doctor on call for him.  We live in a small border city, where many people speak Spanish as their first or only language.  The answering service for the doctor on call had trouble understanding me and I could not understand them.  It took hours and several calls to the service for a doctor to return my call.  Her symptoms were still too vague for the doctor to want to see her in the middle of the night.  Still uneasy I made a call to the NICU staff. They suggested to ease my mind I should bring her in to the emergency room, but not to worry.  My husband convinced me to wait until morning when we could take her to our own doctor.  She had eaten and she was calm and sleeping.  My mother-in-law insisted that we try to sleep.  She and my father-in-law would take the night shift and wake us if anything seemed wrong, or if she wouldn't eat.  At 4 a.m., my mother-in-law woke me, "Catie won't really wake up.  She is extremely lethargic".  My husband and I jumped up and took her straight to the ER.

In the ER, the nurse asked all kinds of questions, that generally made me feel like I was nuts for bringing Catherine in.  Her symptoms seemed vague and she was still eating a limited amount and still had wet diapers, and no real fever to speak of. She was no longer lethargic, but was sleeping soundly.  I know I seemed like a nervous mother, but I insisted that a doctor see her.  We were escorted to a room and we waited nearly three hours.  By this time Catie was awake and screaming again.  The doctor finally came in to examine her and he could tell something was not right.  Given her history he ordered several tests, including one for Group B Strep.

The initial results showed something in her system and she was admitted.  Once again she was put on several wide spectrum IV antibiotics until the full test result came back.  And once again she had tested positive for Group B Strep.  It was my nightmare coming true.  It had found its way into her blood stream, but another spinal tap showed that it was not in her spinal fluid.  This was a good sign for us, because once it is in the spinal fluid it rapidly develops into spinal meningitis.

This time she was admitted to the PICU.  Hospital policy required a parent to be with children under 12 at all times.  Because she had already been released from the NICU she could not go back.  For the next 14 days my husband and I juggled our schedules between being home with our other three children, his job, and the hospital.  I still made a valiant effort, pumping and nursing, but Catie was held to a strict formula diet, so that the factor of consuming breast milk didn't play into how she continued to be infected with the bacteria.  I worried that if babies could get it through breast milk, the other two would still get it.  I was told it was highly unlikely and that Catie's restriction was a precaution.  Once she responded to her medicine, Catie seemed fine.  It was was only a matter of fulfilling the required 14 days of treatment.  We ran into many stumbling blocks because Catie's little veins couldn't handle all the IV's and she frequently had to have them restarted in new locations.  It was painful to watch her suffer, but I reminded myself that she would not remember this.

On October 14, we again left the hospital to have the entire family under one roof and the nightmare of Group B Strep behind us.  Toward the end of her hospital stay she began to fuss more than normal.  We soon discovered it was because she was teething.  Her first tooth appeared two nights after I brought her home.

Several days later my husband was given a career opportunity we could not pass up.  With only five days notice, and our pediatricians' blessings, we packed up and moved from Larado, TX to Charleston, SC  to spend the next 20 weeks living on the beach while my husband taught a specialized federal law enforcement academy.  This brought us closer to our family in Buffalo, NY and we began receiving visitors.  We also made plans to head to Buffalo for the Thanksgiving holiday.  I was to drive with my dad the Monday before Thanksgiving.  It was 5 weeks to the day from the date of Catie's last does of antibiotics.

I woke up early to prepare bottles and get everyone into the car to be on the road at 5 a.m. I checked each baby and realized Catie felt very warm.  I took her temperature and my heart sank.  It was 102 degrees.  I knew then, the way a mother always knows, that with no other symptoms, she had another Group B Strep Infection.  I called the doctor and took her to the emergency room at Medical University of South Carolina, in Charleston.  Because of her history the emergency room doctor ordered several tests, including a spinal tap and a Group B Strep screening.  Everyone tried to assure me that it was just a precaution and that she probably just had the beginning of a Strep throat... a totally different kind of infection in the same family of bacteria...but I assured the doctors and nursing staff that she was suffering another bout with Group B Strep.  Catie was immediately put on IV antibiotics to cover a full spectrum of infections until her test results came in.  Within hours we knew her spinal fluid was clear of infection.  Again, there was no meningitis.  But, two days later testing confirmed that she had Group B Strep.  Catie was given a bone scan to see if the bacteria was hiding in her bones.  It was extremely unusual for a third attack to occur.  A negative result would indicate that it had hidden near a vital organ.  The organ had been protecting it.  Catie's bone scan was negative and all that was left now was to complete 21 days of IV antibiotics.

We had the same problems with her little veins blowing out, unable to handle the course of medicines and fluids being pumped through them.  It was determined that if we could get a line directly into a main vein she could go home on home health care, but even that proved difficult.  She finally underwent surgery to place the line.  After 12 days in the hospital, she was able to come home and we administered her IV antibiotics every six hours.  We gave her the last treatment December 6, 2001.

We were extremely blessed.  To this day Catie suffers no long-term problems, and only has IV scars to show for her ordeal.  My research has taken me to several websites that show just how unnecessary this all was.  There is testing available to pregnant moms.  Group B Strep is carried by one third of all pregnant women and the babies are almost always born healthy when a mom is tested and treated for Group B Strep.  Left untested however, it is the number one infectious killer of newborns.  It can cause pre-term delivery, late miscarriage, still birth, and even death of the newborn child.  One third of those babies who survive form Group B Strep caused meningitis can suffer long-term effects such as learning disabilities, severe mental retardation, loss of sight and hearing, and lung damage.  Premature babies are most vulnerable and are at a high risk for developing long-term complications and death.  Most doctors do not routinely test for Group B Strep until 35-37 weeks gestation, but as a mom pregnant with triplets, you must be your own advocate and insist on earlier testing.  Don't assume the doctor will remember all the details.  You are not harassing your doctor; you are protecting your children!  If you have not been tested and you go into pre-term labor, it is not to late.  You can still be tested and aggressively treated to protect your baby.  A simple test and treatment can completely change your outcome.


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