After the NICU
What to expect after the NICU for parents of babies who need hypothermia or cooling treatment after birth; birth asphyxia; cooling; hypothermia; hypoxic-ischemic encephalopathy; neobrainparents; neonatal encephalopathy; NICU; neonatal intensive care unit; parents.
1. Criteria for your baby to be discharged from the neonatal intensive care unit (NICU)
Your baby may be discharged from the neonatal intensive care unit (NICU) when:
- He/she is breathing by him/herself or with support that can be safely given in a home setting.
- He/she is eating by him/herself or with a feeding tube that you feel comfortable with managing.
- He/she can maintain a normal body temperature outside of the isolette.
2. Effects of birth asphyxia on development
- Hypothermia treatment can be life-saving for babies who have suffered oxygen and/or blood flow deprivation around the time of birth. Unfortunately, some babies will still develop brain damage from birth asphyxia, even after receiving hypothermia treatment, and so are at risk for long-term developmental difficulties. Your baby’s doctor should have discussed with you the results of the brain imaging done on your baby (usually after the hypothermia treatment is completed).
- From studies done on hypothermia treatment, we have learned that babies who suffered from birth asphyxia and who were treated with hypothermia are more likely to survive and not have long-term developmental difficulties compared to similar babies who did not receive the treatment with hypothermia.
- Even if the brain MRI done on your baby shows that damage has occurred, it is hard to predict exactly how this will affect your baby in the future. A baby’s brain has a certain degree of ability to create new connections around an area that was damaged from asphyxia (called plasticity). The extent to which this occurs is unique in each baby, and cannot necessarily be predicted early in a baby’s life. The standard treatment to optimize the long-term outcome of these children is a close follow-up by specialists who will monitor this plasticity, with the addition of supportive rehabilitation therapies, such as occupational therapy and physical therapy if needed.
- To optimize the development of your baby, you should ensure that he/she has good nutrition and growth with adequate rest. Also, providing appropriate stimulating activities (such as reading books, singing and talking to your baby, some “tummy time,” etc.) for short periods of time every day are very important. Remember to take care of yourself too. Having had a baby in the NICU is very stressful; so don’t be afraid to ask for help if you are feeling overwhelmed or exhausted. For more suggestions, please see the “tips and useful links” page.
- A pediatrician or family doctor should follow your baby regularly. In addition, he/she also will be followed at the hospital by a team that includes pediatricians who specialize in infant development (neonatal follow-up clinic), as well as a nurse specialized in NICU graduates. They will work with allied health specialists like occupational therapists and physical therapists to closely monitor your baby’s developmental progress and to give you recommendations on how to appropriately stimulate your baby according to his/her age and developmental stage. If your baby needs to be followed by other specialists (such as neurologists, feeding clinic, respirologists, etc.), the pediatricians from the neonatal follow-up clinic will discuss this with you and arrange consultations with the necessary services.
3. Neonatal follow-up clinic
- A specialized pediatrician in the neonatal follow-up clinic will monitor your baby’s growth and development and give you recommendations on how to best promote them.
- Your baby will receive appointments in the outpatient neonatal follow-up clinic at specific time-points to assess the milestones in his/her development.
4. Occupational therapy
- Pediatric occupational therapy practitioners support and promote the development and engagement of infants, toddlers, and preschoolers, as well as their families and caregivers, in everyday routines. These routines include play, rest, and sleep; activities of daily living (including feeding); education; and social participation.
- Occupational therapy uses purposeful activities to help your baby reach functional independence and facilitate the development of the skills and behaviors needed for daily living.
- The occupational therapy department provides assessment and short-term intervention for children with special needs from infancy through adolescence. They use formal testing, purposeful play, and a variety of activities to assess a child’s ability to participate in the tasks expected at their age. Working with you, they provide a program of activities and exercises to achieve therapeutic goals. They also work in conjunction with other staff of the multidisciplinary team.
5. Physical therapy
- Pediatric physical therapists support and promote the physical development and mobility of infants, toddlers, and children. They also work to support and empower families and caregivers to provide opportunities for movements and physical activities, which may include positioning, stretching, strengthening, and balance activities.
- Physical therapy promotes age appropriate gross motor development as well as functional mobility and independence. It also may include assistance with obtaining necessary medical equipment, such as orthotics, bath chair, walkers, etc.
6. Subcutaneous fat necrosis (SCFN)
- SCFN is a skin complication that may occur over the first 3 months after birth. It often looks like pink or red patches or hard lumps on the back, shoulders, upper arms or legs, or buttocks that can become hard to the touch, bumpy, and purple-red. These lumps may be painful.
- SCFN may cause high levels of calcium in your baby’s blood. High calcium levels in the blood may cause him/her not to gain weight, be tired, sleepy, feed less, or vomit. Most importantly, it can cause cardiac complications and lead to long-term kidney problems. However, if a high calcium level is detected early, it can be treated.
- If your baby develops a skin rash that looks like SCFN or if you think that she/he is sick because of high calcium, you should:
- Stop giving the daily vitamin D supplement.
- Immediately contact your pediatrician or family doctor. If they are not available, contact the neonatal follow-up clinic.