Our daughter Libby was born on June 17, 2016. She was an IVF baby, so we knew just about everything about her before she came. I tested positive for GBS, but my doctor told me it was not a big deal. I researched every little symptom during pregnancy so I think that because this was so near the end of the pregnancy, I just took her word and didn't think another thing about GBS. I was admitted to the hospital at 39 weeks because of hypertension, which is somewhat common with IVF babies. Libby was born the following day and was perfect. We had to stay at the hospital an extra 12 hours because she was jaundiced, then we had to have her checked the next day. Her levels had dropped appropriately, so we assumed everything was ok. We did notice that she had two small puncture wounds on her head, which we believe is from where the doctor broke my water.
Libby behaved like a typical newborn for about the first 12 days of her life. When she was 12 days old, I started feeling poorly. I had a burning pain in my lower back and abdomen, a fever of 103, vomiting, and chills. I felt like I had the flu. At 4:30 in the morning, I called an on call nurse with my insurance company. She recommended that I visit the ER, but I did not want to pay, so I took a pain pill and waited until my doctor's office opened. I saw a nurse practitioner, and she could not pinpoint what was wrong with me. She prescribed some antibiotics and ordered a urinalysis and blood work. I went home and slept, but still felt bad all day. I noticed that Libby wasn't eating very well, but I felt so bad that I assumed someone had fed her a bottle and I didn't think much else about it.
The next morning, she was still not wanting to eat, so I called the pediatrician and made an appointment for that afternoon. As the morning progressed, she started crying every time I picked her up, and seemed to just want to sleep all day. I noticed an episode of strange jerking with one of her hands, so I decided to go early to the doctor. Once there, she had a full out seizure and it was at this point I knew something was wrong. Because my husband was born with only one kidney, I suspected an issue with her kidneys. An ambulance was called for us and we were rushed to Nashville to Vanderbilt Children's Hospital. At this point, she was having periods of not breathing, lengthy seizures, and her color was poor. Immediately she was taken from me and my husband and I were sent to a room with a minister. Doctors came in and out asking us questions about her birth, pregnancy, and anything else we could think of. In the back of my sleep deprive brain I remembered that I had tested positive for GBS. When I mentioned this, all of the questions stopped.
It was confirmed that Libby had GBS bacterial meningitis and sepsis the next day. She suffered many days of seizures, and things were just not going well. An MRI revealed that basically her whole brain had been compromised, and the only part that was still somewhat functional was the part that controls basic functions like breathing and pulse. Her doctors were talking about a brain surgery to remove a clot, but the surgery could not be preformed because her platelets were too low. She also had a clot going into her heart. She had no gag or cough reflex, and her pupils were not dilating. My husband and I met with a team of doctors about her prognosis. We decided to love her for the time she had left. She died about 36 hours after life support was pulled. It was absolutely the toughest thing I have ever been through. We have poured over GBS research in the months after her death. While I still cannot understand why this happened, I want other moms to be aware of the signs and symptoms of GBS. It is so tricky because some of the signs can mimic typical newborn behavior. Even though late onset GBS is not always related to the status of the mother, we feel very strongly that I had a reoccurrence of the infection and unintentionally passed it to our daughter.
What if we had known how to help protect our babies from GBS?
1) Learn about GBS at www.groupbstrepinternational.org
2) Contribute to the cause by making a donation
The first $25,000 raised ~ GBSI plans to exhibit and/or present at two important international conferences, such as FIGO 2018 and ISPID-ISA 2018, and the American College of Nurse-Midwives 63rd Annual Meeting & Exhibition as well as cover our routine printing and shipping of GBS info to parents and perinatal providers.
The next $5,000 raised~ Have our website and all of our GBS materials fully translated into Spanish and then print and ship Spanish-language GBS info to the many requests we've had over the years.
The next $40,000 raised~ Will provide funding to implement statewide distribution of GBS info through two US State Departments of Health and one smaller country's Department of Health. Funding would include staffing, printing, and distribution of materials. (See what GBS mom, Bevin Tomlin did with the State of Alabama!) AND work with those Departments of Health to ensure that babies' death certificates are being updated when pathology tests results are available so that GBS infections are counted! (We learned that this isn't happening as it should - even in the US - when we were at a perinatal conference in Uruguay last year.)
3) Share our posts through your social media
Share ways to promote July as International GBS Awareness Month by clicking HERE
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Let’s make this the best July so far for GBS awareness!