Every mom's worst nightmare is something being wrong with her newborn baby. A mother's instinct is the most powerful tool we have in our arsenal when it comes to our children's health, but we don't always trust ourselves enough to go with it.
This is a powerful lesson that new mom KateGugliotta learned firsthand last year when she and her husband Branden Koch brought home their new baby Felix. He started to display signs of liver problems that went beyond the "newborn breast milk jaundice" their pediatrician kept insisting it was.
Despite not being a baby expert, Gugliotta knew she was an expert on her son and insisted that he be tested more rigorously, and sure enough, she was right.
Her son had Biliary Atresia -- a disease that affects the liver -- and he needed a transplant. Since then, it has been a year filled with surgeries, tests, hospital visits, and emotional distress. Felix has his new liver now and is doing better than ever, but the one thing Kate says she learned more than anything is to trust her own instinct when it comes to her son. It's a vital lesson for all of us. She sat down with The Stir to chat about her experience:
What did you first start to notice with Felix that made you concerned?
Felix's eyes started turning yellow at the corners so I went to the pediatrician when he was a week shy of his 3-month birthday. His eyes had been like this when he was a month old, but seemed to go away. I noticed that his poop was a little lighter than other babies' (however, this changed from time to time too), and we had been told that baby poop came in a variety of colors, depending if you were doing formula or breastfeeding. One afternoon we were hanging out with a friend and their baby in the park and I noticed that Felix's skin looked very yellow compared to her baby, so I called our pediatrician and made an appointment for a checkup.
What did your doctor tell you when you took him in?
The pediatrician reassured us that when Fe was newborn that it was "newborn jaundice" and that it would go away.
What sort of research had you done before the appointment to prepare for it?
We had read about breast milk jaundice online, but one website mentioned that the only way to know for sure is to do a blood test. I googled everything I could find on the Internet about yellow eyes in babies, 2 months old, jaundice ... nothing ever came up about Biliary Atresia [the disease he was ultimately diagnosed with].
Were you alarmed that the doctor seemed to so easily diagnose it without further testing?
I was alone in the exam room at the time breastfeeding after our exam and reading info about breast milk jaundice on my iPhone. That is when I decided to call the doctor back in. I have heard from other families that the AAP doesn't require pediatricians to do a blood test. I had to request a blood test and take Felix to a separate lab.
Did you doubt your feelings when it was happening?
I felt terrible for putting him through the blood draw and thought that I was being paranoid, but something in my gut told me it was the right thing to do. Dr. Sears says in his book: "In my experience the anxiety level of the parents is always higher than the bilirubin level of the baby." He says that both the bilirubin and the anxiety level of the parents need to be correctly diagnosed. I probably read this a bazillion times until I had smoke coming out of my ears.
What is Biliary Atresia?
Biliary Atresia is a fatal disease if not treated. Felix's liver was deteriorating at an alarming rate. His body was unable to absorb or process the nutrients in breast milk. The Kasai surgery is done in hopes to re-create the blocked plumbing that drains the bile from the liver (the biliary tree). There is only a 33 percent success rate of the surgery. The other 66 percent will need liver transplants, if not right away, during their childhood. Felix's Kasai "failed"; however, it did succeed in buying him time. It allowed his body to absorb nutrients and grow, in a sense, preparing his body for transplant and temporarily slowing down the affects of acute liver failure. Just before transplant, Felix was very, very sick.
Has there been any good that has come out of this?
I've met a lot of wonderful families throughout this process who have been really supportive and wonderful throughout. There are support groups online but I preferred connecting with two moms who have daughters who went through the same process before Felix.
What advice would you have for other moms who are worried about what their doctors are telling them?
I would tell other moms to get a second opinion and to trust their gut. Get a blood test if you think something is wrong. Ask questions. Some diseases are so rare they may not be recognized by a doctor who has never seen it before. Trust your gut. Don't ever let someone tell you that you're paranoid. As much as my husband and I prepared for the labor and birth of our son, nothing could have ever prepared us for this. Pretty much everything we planned for as parents went out the window the first six months of Felix's life.
How is Felix now after his transplant?
He is doing terrific and is rolling, babbling, eating solids, and doing everything a little baby his age should be doing. He'll need physical and occupational therapy for a little while, but he'll catch up and will soon be running around and destroying our apartment. We can't wait.
Though Felix is doing very well, he will need a lifetime of medications and a donation to COTA (Children's Organ Transplant Association) will help Felix and children like Felix as they get older. To learn more about Felix and his parents Kate and Branden, please visit his website. Any donation is obviously very appreciated.
This lesson is a vital one for all moms of little ones. Trust your instinct. It could save your baby's life.
Did you ever have a medical issue your doctor didn't take care of well enough?