Category: Preterm Infants

Expert opinion, Preterm Infants

Advocate for your baby in the NICU

babyshastra

ADVOCATE FOR YOUR BABY IN THE NICU

The NICU is one of the most intimidating places for a new parent. It is filled with beeping technology, wires and multiple professionals all of whom seem to be using words you do not understand, not to mention the heartbreaking and scary experience of having a child in NICU.
An NICU is a very controlled environment, a lot of the time parents don’t feel like they can voice an opinion or ask a question. The professionals around them seem to be too busy and seem to know what baby needs better than the parent! However a parent is the best advocate for any child, no one can do that job better than you. Here are some tips on communicating with professionals in the NICU:

  1. Do not be afraid of asking questions during daily counseling sessions. If the professional on the team uses a term/jargon you do not understand ask them to elaborate and explain what it means.
  2. Make lists, you will come up with questions or have doubts when the doctor is not around. It helps to write things down so that you don’t forget to ask them when you do get the opportunity. It also helps to prioritize concerns, so that you can bring up these concerns in the beginning of the appointment.
  3. Make notes during the appointment, so that you can convey accurate information to your partner if he/she is not present during the conversation. These notes will also help you keep track of what the medical professional thinks should be the outcome of an intervention, that way if a intervention is not working as it should you can quickly advocate for your baby.
  4. If you feel your concerns have not been addressed, state this clearly. You can go over the details again or ask for more information from your doctor. If necessary ask for a second opinion. 
  5. Ask your doctor if your baby is stable enough to do kangaroo care (skin to skin contact between parent and child), kangaroo care has been shown to have a lot of benefits for low birth-weight and premature babies including improved cardiorespiratory and temperature stability and better sleep, in addition to being beneficial to the breastfeeding relationship.
  6. Ask for help with breastfeeding, try to find a lactation consultant who can help you latch baby or pump for baby. Breast milk will help your baby’s tummy mature and help fight infections. Breastfeeding is also automatic skin to skin! In situations where the mother is unable to breastfeed or pump for baby ask if the hospital has a milk bank.
  7. Premature babies develop differently than full term babies. It is important that parents advocate for their children and ensure that regular developmental screens are conducted so that any delay can be caught early. Ask your doctor for referrals when it is time to take baby home from the hospital.

Parents of preemies share your tips here: What questions did you ask? What questions did you wish you had asked? Did you take a list of questions with you? What to expect on the first visit? What to do if the professional is using too much medical jargon?

 

Happy Parenting

Lalitha Acharya

11/25/2015

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We would like to thank Lalitha Acharya for writing this post. Lalitha is mother to a 2 year old and a psychologist with a M.S in Clinical Psychology from the US. She has experience working with traumatized children and their families and running groups for individuals diagnosed with severe mental illnesses in both inpatient and out patient setting.

Expert opinion, Preterm Infants

My experience as an early intervention therapist for preterm babies

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Having worked with preemies babies straight out of the NICU, I can endorse the facts that there is so much more complexity to preemie development than any other. In many countries around the world, preemie babies are given special status, which means that they are automatically eligible for monitoring of development till they are at least 2 years old.

As an early intervention therapist and service coordinator in the US, I have followed many babies as soon as they come home from the NICU. Support for families include discussing how to take care of the baby within the home and family environment, how to inform other family members about the many do’s and don’ts associated with a preemie baby, how to create a development friendly environment and what to expect from preemie babies.

All families were followed by a service coordinator once a month and all five areas are tracked using parent questionnaires. As soon as a concern is noted or observed, simple environment changes are suggested to see if the baby will respond differently. If there is further need for intensive hands-on strategies, then services are provided accordingly. This system is put in place so we can monitor and track all at-risk babies and prevent any long term delays.

Families who are diligent from the beginning had higher chances of not needing any additional support after 3 years.  A lovely family I worked with had twin preemie boys. As usual, both babies were regularly screened and we picked up a delay in one of twins at the 3 months screen. There was a distinct lag in head control and we started with regular therapy sessions. At the 9 month check, this baby was at par with his peers. In fact, I remember that he walked 2 weeks before his brother did!

On the other end of the spectrum, I distinctly remember a child we were following right from the time she came home from the NICU. The family, for various reasons, decided not to pursue regular services after 6 months. At 2 years, when the child needed help with speech and problem solving skills, they came back to the program. If they would have remained within the regular monitoring system, there is a good chance that we would have picked this up sooner and the child would have shown some progress.

There are many possible outcomes of development in a preemie baby and it is impossible to make a guess of what will happen unless development is tracked closely. There could be multiple outcomes ranging from all perfectly okay to a diagnosable condition in a few years.  Since there is no way of predicting it, all we can do is keep a close watch and try prevention.

If there is one thing parents can take away from all of this, please remember to track your preemies development, not only growth. Growth is measured by height and weight while development is measured using milestones and skills.

While there is a general lack of awareness to track development in India, families with premature babies are hit the hardest! During NICU stay, families are overwhelmed by the medical aspects and bringing your preemie baby home in itself feels like a huge victory.

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Please do remember that this is just the beginning to their beautiful lives. Track their milestones based on adjusted age and know that premature birth come with certain developmental risks that are visible later in life. Be aware and educated so IF there is need, you know what to do and where to go.

Happy Parenting

Puja

11/20/2015