A new mother sent us this question. “My baby has sickle cell. How can I tell if she is having pain or if a crisis is about to set in? She gets really upset and cries sometimes, and I’m instantly worried but have no way of knowing.”
Over 75 responses later, sickle cell warriors (parents and patients alike) gave her tons of advice. Read the thread on the Facebook page HERE. I’m writing this article in the hopes that another parent will find the answers useful.
Most of the babies will exhibit more than 1 sign below. Each element assessed by itself may not always mean a pain crisis, but several of the signs going on at the same time is a good message to you that some pain is affecting your precious baby.
Signs of a Sickle Cell Pain and Crisis in Babies
- Continuous and Persistent Crying: Crying can be indicative. Once you eliminated all the other possibilities of the crying (diaper, feed, sleep, comfort), and nothing seems to work, your child may be having sickle cell pain.
- Swelling: Hands, feet, and limbs may seem bigger than usual or swollen and puffy.
- Jaundice: Yellowing of the skin and eyes. You should monitor your baby’s eyes daily. The sclera (the white part) may be yellow. The deeper the yellow, the more likely a crisis. Some eyes may not be yellow, but just a ‘change’ in the eyes.
- Warmth: The affected extremity may be warmer than the other one. For example, the foot, leg, or thigh may have a warmer temperature than the other one that has no pain. Also may occur in knees, arms, pelvis or any joint.
- Fever: This often the last sign for crisis or pain. A fever greater than 101 degrees F is a solid indicator. A fever means your baby may have an infection, which does lead to pain/crisis. Most crisis also have a fever component attached in almost all babies.
- Withdrawal and Sensitivity to Touch: If you baby reaches for you, but then pushes you away or doesn’t want to held, or touched, she/he probably is having some sort of pain. They want your comfort, but you holding them may be causing more pain. So if you notice this mixed message, they probably have pain.
- Mood: Really irritable
- Lack of Appetite: If your baby is not eating or drinking milk as she usually does, then this can be another sign. This can lead to dehydration which can lead to a pain crisis.
- Lack of sleep: If you are on a regular sleep schedule and your baby cries all night long, and does not sleep
- Movement: The baby does not want to move, and if they move, they will cry. If a toddler, you may notice limping.
- Color: If she has paleness or lighter coloring especially in the palms of hands and feet, inside of mouth…Also may have black or blue areas on lips, toes, fingers or skin. This is from diminished oxygen to tissues because of low blood count
- Lethargic or Limp: Just not moving, walking, or acting as usual.
- Intuition: Over time you will develop the intuition that will just kick in and tell you. My mom would just look at me and ‘know’ that I was in pain. It is your mothering instinct taking over. If your gut is telling you something is wrong with your baby…then take her to get checked out by a doctor.