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Monday, May 30, 2016
Newborn and Infant Care
Head circumference remains the same
My baby was born at 24 weeks gestation and as she grew her head circumference was increasing until she reached 36 weeks. For the last four months or so, her head circumference has remained the same. Our developmental doctor said that she will most likely end up severly retarded with cerebral palsy since her head has not grown for the last four months. Who can I consult? I refuse to take her off support without knowing for sure that her outcome will be negative. Her vitals remain strong, her heart is good, her kidneys, liver however they tell us that the TPN she is on is what is keeping her strong, it is not being used to grow her brain and that we are missing the "window" of opportunity for the much needed brain growth we need. She is too unstable still and had experiences with NEC and has not had the much needed nutrition she has needed since birth since this fact. What should I do? Who can I contact? Is there a catchup chance for her when she IS able to get her needed nutrition or is too late for catch up and further growth of her brain? I am desperate.
You pose multiple difficult questions. The simplest answer is, have you asked your NICU team to take your baby's situation to the Ethics Board of the hospital? You would play a role in information presented to the board. However, I'm not sure that this will answer all of your questions. There is usually the option of speaking directly with someone from the ethics board, to help you focus all the issues surrounding your situation. You describe an infant who has had to fight for every day of life. This takes a toll on most premature infants. While science has improved techniques and procedures for the care of these very vulnerable infants; the quality of life for those who survive varies widely.
The healthcare providers who are working with you do have the benefit of intimately knowing your baby's history and medical course. Often, if there is any question of what should be done, specialists consult with each other from different facilities, states and countries.
In my experience, the suggestion or option to remove an infant from life support is made with great care and consideration and only in the most dire situations. While having a heart rate, temperature and blood pressure that are normal, or acceptable, is a positive, you bring up some very concerning points. Due to baby's NEC and need for TPN, stresses have been put on baby's liver, and general growth. Try as the medical profession does, TPN is not as good as breast milk or even formula. It is usually the only option though with NEC. Lack of head growth is very concerning. Brain formation has been slowed or stopped. This affects thought (cognitive) as well as physical (motor) development. How much is beyond my ability to judge.
There are a variety of types of cerebral palsy, and the situation you describe may well be pointing to one of the more severe forms of the condition. United Cerebral Palsy is an exceptional resource for learning how to deal with the needs of the condition. Their website is available at: www.ucp.org/.
Ultimately, the care of your child is your decision. You have several very difficult questions to answer which involve your belief system and personal ethics. There is no one answer for all.
Sarah Sauntry, RN, MS, CPNP-PC
Assistant Professor of Clinical Nursing
College of Nursing
University of Cincinnati