NICU (Neonatal Intensive Care Unit) Questions of Ethics

Isaiah Charles, our 8th baby, was born on December 21st, 2009! He was born between 4 and 5 weeks premature and weighing 6lbs 1oz. This was our second time experiencing a child being born and having to spend time in the Neonatal Intensive Care Unit (NICU). Thankfully, it was a much better and shorter stay than the first time. Isaiah had respiratory distress from having immature lungs. He had to be put on a CPAP machine, oxygen, a central line, an IV, and a feeding tube. He gradually improved over the next 3 weeks and was able to come home on Friday, January 8th, 2010 and is doing very well!

Our first experience was with our second daughter, Emilly. She was born at 26 weeks gestation, about 3 months premature. Weighing in at 1lb 11oz, she was considered a micro preemie. She had to go through 3 major surgeries and several minor ones (if you can call a surgery on a micro preemie"minor"). Having a condition with her small intestine called "narcotizing of the bowel", part of her small intestine died and had to be taken out. Because the small intestine is the part of the body that absorbs nutrients from food, you cannot live without it. Over the 4 months that Emilly was in NICU she had this condition twice! After the second surgery the surgeon said that she had "just" enough intestine to live on if she ate constantly to keep up her nutrition.

We were able to bring our baby girl home after 4 long months. We had to bring her home on an IV, a feeding tube and a broviac. What we didn't know was that the TPN she was on damaged her liver completely. After having her home for 2 1/2 months, Emilly passed away on June 20th, 1995.

After going through this experience the first time, my husband and I had to ask ourselves if we wanted to take the chance of going through this again...to put another baby through the "suffering and pain" that Emilly went through and if it would be worth it.

While I was at the hospital with our last baby, I came across a book called Your Premature Baby by Frank P. Manginello, MD and Theresa Fay Digeronimo, M.E.I highly recommend this book if you have a premature baby in the NICU. It was very helpful and explained quite a bit of what it is like to experience having a preemie. In the back of the book are a set of ethic questions that I thought were very interesting. Here are 5 of the questions with my answers and opinions.

1. As increasing numbers of smaller and less mature preemies survive, aren't we also increasing the numbers of severely handicapped children who come into the world? Yes, I believe we are increasing the number of handicapped children. That doesn't mean that handicapped children are a bad thing to have. Handicapped children enrich our lives! No one "wants" their child to be handicapped, but sometimes God allows them to be. He created them this way because He knew them before they were born and He also knew who to give them to. Maybe in years to come God will increase our knowledge of technology and we will be able to have healthier premature babies and have less of them handicapped.
2. Where is the line between too immature to live and mature enough to survive? I don't think there is a line. If the baby is born premature, I believe we should use all of our knowledge to do our best to help these little ones survive. God will be the one to decide whether they should go on living.
3. Is it right to continue aggressive treatment for infants who may not have much of a chance for survival? I think the key word here is "may". If they have a chance to survive, why not give it to them?
4. Who should decide whether or not to continue aggressive treatment?This decision should be made by the parents with the advice of a physician. If there is a disagreement between the parent and physician, then the parents should have the final say.
5. Medical technology is allowing smaller preemies to survive, but at what cost? Ask any loving parent who has a child with a disability if they would put a dollar amount on the life of their child, and I am sure they would say "no". Our country is too wrapped up in money that they wouldn't help save a precious life because it "cost too much".

I don't want to have to go through getting on the emotional roller coaster that an extremely premature baby brings, but I would ride it again if the Lord seen fit to bless us with another precious little life. It is a hard path to walk, but with God's strength it can be done.

I want to say thank you to all the doctors and nurses who work in NICU! They do such a wonderful job with the little babies as well as having to deal with emotional parents. Thank You!!