October 27, 2007 marked 9 years since the day we met. For my husband and I, it was the scariest day of our life. I was admitted to the hospital, 23 weeks pregnant, with premature rupture of membranes. We were told that, statistically, our baby would be born within 24 hours.
I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.
Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.
Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.
2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.
My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.
But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.
Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.
After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.
It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.
Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.
When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.
I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.