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<ul class="summary-list"><li>My baby was diagnosed with <keyword id="13569902" type="UNKNOWN" weightage="60" keywordseo="biliary-atresia" source="Orion">biliary atresia</keyword> when he was 2 months old.</li><li>While Google helped me identify his symptoms, it was a doctor who listened and diagnosed him.</li></ul>When my son was 2 months old, my sister-in-law met him for the first time. She wondered why he was still jaundiced, so we Googled it.If you Google "<a href="https://www.mayoclinic.org/diseases-conditions/infant-jaundice/symptoms-causes/syc-20373865">jaundice baby</a>," the internet reveals that jaundice, a yellowing of the skin, is common and usually harmless. It can persist for the first few weeks of life or longer.My son, however, had another strange symptom: pale-colored stool. If you Google "<a href="https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/what-we-treat/specialties/gastroenterology-hepatology-nutrition/stool-color-overview.html#:~:text=If%20you%20suspect%20that%20your%20infant%20has%20white%2C%20chalky%20grey,be%20found%20on%20our%20website.">jaundice baby light poop</a>," the results are not so innocuous — you enter the realm of rare diseases.Going down the rabbit hole of internet diagnoses, I knew, like a thunderclap, that my baby had a disease called biliary atresia.While I don't recommend Googling everything — on the spectrum of hypochondria, I lean toward "We're all dying!" — this time it actually saved my son's life. A doctor diagnosed him, and he had surgery almost immediately.<h2>He has a rare disease</h2>A fear gripped me deep inside as soon as I read about biliary atresia. This wasn't a silly worry coming from my mind but a sheer panic coming from my heart, from a place of instinct. My son was <a href="https://www.insider.com/how-much-weight-should-a-baby-gain">gaining weight</a> and meeting the milestones of babyhood, but now I wondered if he did in fact have a congenital disease.The next morning, a Saturday, we visited the clinic. The doctor listened as I explained my baby's symptoms: jaundice and a stool color that was never white but consistently pale. I was under the impression that any shade of yellow was OK. Actually, his pale-yellow stool was cause for concern. The doctor prescribed a bilirubin blood test and said she would consult a pediatric gastroenterologist.First thing Monday morning, the clinic doctor called. I quickly realized we were having a medical emergency. Someone from the children's hospital called to say we should present ourselves at 8 a.m. on Tuesday. "Bring a suitcase," they said.A suitcase. My baby and I were going to the hospital, and we were staying. As I sat across from the pediatric gastroenterologist the next morning, she explained why: She suspected my son was born with biliary atresia. A surgery called the Kasai procedure is the first step in treating it. It needs to be done before 90 days of life. "Your son," the doctor said, "is 80 days old."<h2>Biliary atresia can be fatal</h2>Babies born with biliary atresia have defects in their bile ducts, the system that carries bile from the liver to the gallbladder and intestines. Faulty ducts cause bile to become dangerously trapped in the liver. Without medical intervention, biliary atresia is fatal by 2 years old.According to the <a href="https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/biliary-atresia/#facts-at-a-glance">American Liver Foundation</a>, biliary atresia affects one in 8,000 to 18,000 births throughout the world each year. So in Canada, where I live, 30 babies might be born with biliary atresia this year. In the United States, it might be 300 babies.The next few days were a blur of tests, visits with specialists, and lots of tears on my part. Only a week after I'd first heard of biliary atresia, my baby underwent an all-day surgery in hopes of repairing his bile ducts.I don't yet know the long-term prognosis for my son, but I do know that without the actions of my sister-in-law, the clinic doctor, and the pediatric gastroenterologist, my baby might have missed the life-saving intervention he required. I think of those three as his guardian angels.

My baby was born with a rare congenital disease, and I didn't realize until he was 2 months old. Googling his symptoms helped me advocate for him.

<ul class="summary-list"><li>My baby was diagnosed with a rare liver disease when he was 3 months old. </li><li>He was hospitalized for two months and received a liver transplant. </li></ul>My baby was hospitalized for almost two months during his first year of life. Facing a <a href="https://www.insider.com/my-baby-has-a-rare-disease-best-thing-people-said-2022-3">life-threatening disease called Biliary Atresia</a>, it was a stressful time. My son underwent an initial surgery to repair his malformed bile ducts. The surgery did not fix the issue, so he received a liver transplant.Without medical intervention, <a href="https://www.insider.com/my-baby-has-rare-disease-called-biliary-atresia-2022-4">Biliary Atresia is fatal by the age of 2</a>. Multiple people saved <a href="https://www.insider.com/mom-with-immunocompromised-child-shares-what-people-should-know-2022-11">my baby's life</a>, and my heart is overflowing with gratitude. I am thankful to my son's organ donor and the donor's family: their selfless choice saved my child. I am grateful for my son's team of doctors: their care and expertise saved my child.Then, there are the nurses. Nurses are very special human beings. They seemed superhuman in how they helped my son and me. My baby was hospitalized so the doctors could save his life, but during that time, the nurses saved me.<h2>They saved me with their humanity</h2>When my son was diagnosed at 3 months old, he was immediately admitted to the hospital for 10 days. My world turned upside-down when he was diagnosed. I was hopeful that my son would receive the medical attention he needed, but I was flooded with worry.I was stressed and confined to a hospital room with my baby. I talked on the phone with loved ones, but I still felt sad and alone. It was the nurses who provided companionship. I could see how busy they were, so I was amazed that the nurses chatted with me. I expected them to check my son's vitals without conversation, but whenever they came into the room, they said a kind word.They asked how I was doing. They reassured me that things would get easier. They gave me information about liver disease. Those conversations fortified me. The nurses were sharing more than just their skills: they were sharing their humanity. During our first 10 days in the hospital, the nurses provided emotional comfort during a scary time.<h2>They made me as comfortable as possible</h2>When my baby returned to the hospital for a liver transplant, he stayed for six weeks. I knew that my son was gravely ill, so this hospitalization was less of an emotional shock than the first one.Even so, it was a challenging experience. I mostly stayed at the hospital while my husband cared for our older children at home. My husband continued to work while I was on maternity leave from my job.During this time, the nurses were indispensable in how they bettered our life at the hospital. They constantly did things to improve my son's stay, like bringing him toys or trying different creams on his diaper rash.They also made my stay more comfortable. One evening, I accidentally missed the deadline for buying dinner for myself. I tried to brush it off, but one of the nurses said, "You need to eat," and she brought me to the staff cafeteria so I could buy some food. Acts of kindness like that were not unusual. They are the norm for nurses.<h2>I hope they know how thankful I am</h2><a href="https://www.insider.com/teacher-and-mom-shares-how-to-prevent-summer-slide-kids-2023-6">As a teacher</a>, I, too, work in a "caring" profession. Like myself and my teacher friends, I know that nurses truly want to help others. They did not choose their career for recognition or praise, but I hope they realize how appreciated they are.The nurses who worked with my son made my life infinitely better during a difficult time: I am forever grateful.

Doctors saved my baby's life but the nurses saved me

<ul class="summary-list"><li>My son was born with biliary atresia, a rare congenital disease. </li><li>He received a liver transplant and, as a result, is now immunocompromised.</li></ul>After the past few years of pandemic living, my family and I are ready to return to a normal social life. We are ready for the pre-pandemic days when I could text a friend on a Friday night and ask, "Want to hang out?" In the good old days, I didn't ask about close contacts, vaccination status, or coldlike symptoms.I am ready to return to a normal social life, but I can't. My baby is immunocompromised.My <a href="https://www.insider.com/my-baby-has-a-rare-disease-best-thing-people-said-2022-3">youngest child</a> was born with a rare disease called <a href="https://www.insider.com/my-baby-has-rare-disease-called-biliary-atresia-2022-4">biliary atresia</a>. Without medical intervention, biliary atresia is fatal by the age of 2. A liver transplant saved my son's life. But post-transplant, he is immunocompromised.Being immunocompromised means having a weakened immune system. In the case of a transplant recipient, antirejection medication suppresses the immune response so that the body will accept the transplanted organ. Most transplant recipients take antirejection drugs for the rest of their lives.I want to have a social life, but I also want to protect my son's health. So while many folks are returning to pre-pandemic habits, I still ask that pesky question: "We would like to hang out, but are you sick?"<h2>I sometimes feel like a hypochondriac</h2>Our friends have been exceedingly understanding, but I sometimes wonder whether anyone thinks I'm a hypochondriac. I often say my son is immunocompromised, but I don't always explain what that means. I wonder whether people know what it means to be immunocompromised; I didn't until it touched me personally.When the immune system is weakened, a person is affected twofold: It is easier to get sick, and the effects of a sickness can be more severe. An illness that a healthy child could fight off might cause an immunocompromised child to be hospitalized.It is recommended for immunocompromised kids to avoid being around people with contagious illnesses — including but not limited to COVID-19. It is important to safeguard against foodborne illnesses that can come from undercooked meat or spoiled food. Immunocompromised kids are also more susceptible to infection caused by construction dust or unclean water, as well as by bacteria from animals.Another consideration for liver-transplant recipients is that a simple illness, such as a cold, can raise the liver enzymes and look like a bigger problem, such as rejection of the transplanted organ. Mild cases of rejection can be treated with medication, but it's still a serious issue that cannot be ignored. This means extra tests for the child — and extra stress for the family.<h2>I am careful with my son's health, but he also needs to live</h2>Honestly, it's scary to have a child who is immunocompromised. Life feels riskier. But I am realizing how important it is to find peace in my child's diagnosis, not just for me but for him, too.Even though I ask about sickness before we socialize, I know that my son will inadvertently get sick sometimes. That is scary, but it's OK. In the planning stage, we are cautious, but in the actual living of our lives, we must be fearless.After my son's transplant, when the medical team reiterated his immunocompromised status, I said, "I wish I could put him in a bubble."His surgeon immediately said, "You can't. It wouldn't be good for him."There is an irony in watching your child receive a life-saving medical intervention. Seeing your child so close to death, you truly want to put him in a bubble. But his life was saved so that he could live.

My child is immunocompromised. I used to wish I could put him in a bubble, but he needs to live his life.

<ul class="summary-list"><li>When my baby was only 2 months old, he was diagnosed with a rare liver disease.</li><li>He needed immediate surgery, which left me grieving the <keyword id="11894571" type="UNKNOWN" weightage="60" keywordseo="health" source="Orion">health</keyword> of my baby.</li></ul>At 2 months old, my son was diagnosed with a rare liver disease called <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/biliary-atresia">biliary atresia</a>. Biliary atresia involves defects in the bile ducts, the system that carries bile from the liver to the gallbladder and intestines. Without medical intervention, it's fatal.The experience was intense and surreal. In what felt like an instant I went from thinking my newborn was perfectly healthy to fearing for his life. But talking on <a href="https://www.insider.com/how-social-media-affects-relationships">social media</a> about what we were going through gave me the perspective needed to keep going and be the best mom I can be for him.<h2>My mind kept going to the worst-case scenario</h2>I was weepy for the first two days in the hospital. As I tried to muster hope and faith and gratitude, my mind kept filling with fear, guilt, and sadness. <a href="https://www.insider.com/stages-of-grief">I was grieving</a>. It felt impossible to stop my mind from dwelling on the worst-case scenario.On the third day my head hurt and my eyes were puffy from crying. My older sons were coming to visit, and I said to myself, "Enough." I took some Tylenol. I took a shower. I also took to Facebook.I posted on my Facebook page, explaining the diagnosis and asking for good vibes. I actually hadn't realized how comforting the encouragement of my friends and family would be; each comment and message was like a candle lit in the dark.One type of comment was especially comforting. It went something like, "You are exactly the mother he needs," or "You are a great mother to him," or, more simply, "You are a great mom." I found myself lingering on those words. They made me feel strong. They fortified me.<a href="https://pubmed.ncbi.nlm.nih.gov/2748778/">Psychology tells us</a> that humans are happiest when we feel a sense of control over our lives — but when your child is ill, there is an earth-shattering, free-falling, giant loss of control. I can't snap my fingers and make my son's liver work. I can't stop the progression of his illness. I can't see his future. But I can be his mother.<h2>The one thing I can control is the kind of mother I am to my children</h2>How I show up as a mother is one of the few things I can control. Thinking about being a mother gave me back my sense of agency, and that's why comments about my motherhood were so reassuring. I can't control my son's disease, but I can be the best possible mom as we battle it together.In my mind, I conjure what it means to be a strong mother. I'm not talking about the image of the "perfect mother" who doesn't exist. I'm talking about the physical and emotional strength that parenthood forces people to have. Waking up for late-night feedings when your body is bone-tired. Stopping a toddler from running into the road again and again and again. Soothing a child who was not invited to the birthday party. Talking about life plans with your teen.<keyword id="11910745" type="UNKNOWN" weightage="100" keywordseo="parenting" source="Orion">Parenting</keyword> in a new context, in a hospital room, I reminded myself that I am strong and that I get to decide who I am as a mother.I want to be the mom who sings to her baby. I want to be the mom who FaceTimes her older kids and makes them laugh. I want to be the mom who posts honest sentiments on Facebook that she is scared but also hopeful. I want to let go of fear and focus on better things.That's exactly what I plan to do.

You Searched For "biliary atresia" and got 4 results

My baby was born with a rare congenital disease, and I didn't realize until he was 2 months old. Googling his symptoms helped me advocate for him.

J.B. Lacombe

Doctors saved my baby's life but the nurses saved me

J.B. Lacombe

My child is immunocompromised. I used to wish I could put him in a bubble, but he needs to live his life.

J.B. Lacombe

My baby has a rare disease. Hearing from others that I am a great mom keeps me going.

J.B. Lacombe

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