The ROP FAQ
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In 1998, I experienced a paradigm shift. It wasn't that I hadn't known about my premature birth before this time--I had known about it for as long as I could remember. But it had been a fact to me. I didn't even understand that it was the cause of my blindness. But as I sought treatment for the conditions responsible for a recent loss of my already minimal vision, I felt drawn to search for information about the conditions. If I couldn't regain the vision, at least I could understand what was happening to me.
The search was not easy. It led me to Websites, email lists, and medical books and journals. I began to understand my eye conditions, and I would continue to take in information like a camel taking in water. I also began to understand how much I didn't know about the impact of premature birth on the child and on the family.
My parents had no information about blindness or other problems related to premature birth when I was growing up. They did the best they could with the resources which were available to them: mostly a generous amount of creativity and problem-solving ability. But to them I was simply a blind child. My quirks were just quirks, the things that made me me. Not until I began to learn about premature birth did I understand that these quirks might indicate mild forms of conditions which could be very disabling for other former preemies. I began to understand my peers. I began to understand the concerns of the parents for whom I want to serve as a resource.
I was born in 1972 weighing two pounds and two ounces. I am unsure of my gestational age--apparently it was calculated differently then. The above picture was taken from outside the nursery window when I was two and a half weeks old and had dropped to one pound and 14 ounces.
I came home In August, 1972, weighing five pounds. My mother does not recall that I was very ill during my first year of life. However, at five months of age I was diagnosed with ROP. Today ROP can be diagnosed within the first few weeks of life, often before the baby leaves the NICU. It is classified according to its severity and can also be treated. None of this was done in 1972. In fact, ROP was known by a different name then. It ran its course and often resulted in total blindness or severe visual impairment. I retained some vision, but this was not discovered until after my first birthday.
I have been told that studies show that preemies have a higher incidence of psychiatric problems and have read that asthma, learning disabilities, and neurological conditions are also very common. I once had a psychology professor inform me that the IQ of a preemie will be lower than that of anyone else in the family. I gave up trying to enlighten her, but my own experience does not support such a generalization. I believe that preemies can (and many do) experience many problems not common to the general population. Preemies are also vulnerable to genetic conditions which may present additional difficulties or even magnify the effects of prematurity-related problems.
The debate over "viability" distresses me greatly because I often perceive that disability is considered a justifiable reason for not saving the life of a child. I know how to think about this rationally, but doing so is a difficult task. I, like many adult preemies, am greatful for my life. Certainly there are times when depression and even suicidal thoughts take hold; but I don't know many people who have not struggled with these things whether or not they have disabilities. At the same time, I also recognize the impact of pain and the need to be able to choose not to subject a child to painful experimental procedures.
The real issue in this debate is informed choice. I support informed choice. I support truly informed choice. That means not only having information about risks but also being informed that disability is not necessarily tragic, that it need not destroy quality of life. It means being informed that resources exist to help families cope and learn to accommodate the needs of people with disabilities. It means knowing that every family responds differently to disability. One family may find the care of a child with severe disabilities to be overwhelming; another may acknowledge that it is difficult and emotionally draining but welcome the opportunity and strive to enable the child to achieve her full potential, regardless of how that potential compares to what is "normal" in our society.
Many resources are available now to assist families in adjusting to life with a child born prematurely. Fortunately, a growing number of these resources address issues facing school-age children and teenagers as well as infants and toddlers. I hope to provide a guide to some of these resources on these pages.
I also hope to provide information about the experiences of adults born prematurely. We have been the "guinea pigs," and there is little information available about the issues we face. In order to put together any resources, it would be necessary to draw a lot of conclusions and piece together a lot of fragments because there are very few long-term studies of older preemies. More studies seem to be taking this road now, but preemies born in the 1980s differ significantly from preemies born in earlier times for many reasons.
Premature birth has many causes. Often it is caused by an infection or complication of pregnancy. Multiple births are also a contributing factor. Furthermore, parents of premature infants often feel anxious about having more children. The Pregnancy Information Center provides links to sites discussing complications of pregnancy which can result in premature birth as well as other pregnancy resources.
A preemie will spend the first weeks (and sometimes months) of life in the neonatal intensive care unit (NICU). The length of stay will depend on the health of the baby. During this period of time, parents will learn a lot of new terms. If you are preparing for a premature birth or have a baby in the NICU, get a head start with a glossary. If you are a medical professional or are often in the NICU, please use this list of NICU dos and don'ts, compiled by parents of preemies.
Many parents are now allowed to touch, hold, and even feed their preemies in the NICU. Touching your preemie strengthens your bond during a time when human contact often means a painful procedure is being done. The article called "Learning to Touch a Preemie" will help you to become familiar with techniques for touching your baby and knowing when to provide some space.
Diane Maroney and Amy Tracy's book, "Your Premature Baby and Child", is written in an easy-to-read format and includes many quotations from parents. It begins with a discussion of the NICU and ends with a discussion of caring for preemies who have reached school age. The book is available from Amazon.com for $11.96 using the link above. More information and articles are also available on Amy Tracy's site. For information about attachment issues, emotional support, feeding problems, and other health concerns, visit Diane Maroney's site.
Several other books have also been published for parents of preemies during the last three years. Some are listed below with links leading to their pages at Amazon.com.
Preemies often have special medical needs, including brain damage, lung problems, and ROP. Brain damage may take two forms: PVL and intraventricular hemorrhage. Damage from these conditions may cause cerebral palsy, epilepsy, autism, attention deficit disorder, and learning disabilities. For more information about epilepsy, visit my epilepsy page. The best site I have seen for resources about learning disabilities is LD Online.
Bronchopulmonary dysplasia (BPD) is a lung condition which causes difficulty in breathing. Preemies with BPD may be vulnerable to respiratory illness because of lung damage.
As I have mentioned above, ROP is also a common concern for parents of preemies. To learn more about it or to find out where to network with others, please visit my ROP page, which contains general information about ROP and email-based discussion groups as well as links to personal experience stories and a FAQ based on discussions from the ROP email list.
Parenting Multiples
This site is maintained by the father of triplets. Articles are very creative, and links are provided to sites on a variety of topics. You can also participate in chats and discussion forums. Visiting this site opens pop-up advertisements occasionally.
Parenting Infants and Toddlers
Visit this site for information about baby care, development, and equipment. Visiting this site opens pop-up advertisements occasionally.
Parenting Children with Special Needs
Here you can find out about a variety of disabilities and other issues of interest to parents of children with special needs as well as participate in chats and discussion forums. Visiting this site opens pop-up advertisements occasionally.
Mara Stein's Support for Preemie Parents
This site was put together by a clinical psychologist who is also the parent of preemie twins. It contains a number of articles dealing with the emotional impact of having a preemie.
Long-Term Developmental Outcomes of Low Birth Weight Infants
This article explores developmental issues related to prematurity.
Chances for Disability for Premature Infants (Center for Perinatal Care)
This page explains the prevalence of disabilities among premature babies from this particular NICU.
Laura's feeding tips page
It is not uncommon for preemies to have difficulty with feeding, especially with textured foods. Here are some tips and resources provided by the parent of a preemie.
Hannah's Prayer
This California-based organization offers support to families dealing with infertility, pregnancy, or loss of a child during pregnancy or early infancy.
Premature Baby Premature Child
Allison Martin has put together an excellent site with articles about preemies' development, special needs, and research.
Getting to know other parents of preemies can be very empowering. Not only does this enable you to feel less alone, but it also allows you to share your knowledge with others and take advantage of the knowledge they share with you. Several resources exist for this purpose. In addition to the forums at some of the above sites, you may want to try one or more of the following groups.
Preemie-l Discussion Group
This is the homepage for the Preemie-L discussion list. You can find out about how to subscribe to the list, read about how the list started, and much more.
ROP-Support
This is an email discussion group for people with ROP and their families. Many parents participate in the discussions as well as a number of adults who have ROP.
BVI-Parents
BVI-Parents is an email discussion group for parents of children who are blind or visually impaired regardless of the cause. The list has over 200 participants and traffic is moderate. Topics include getting babies to move, feeding issues, classroom modifications, and much more.
Our-Kids
Our-Kids is an email discussion group for parents of children with all types of special needs. Topics include medical care, educational issues, family relationships, and more.
The Our-Kids Website is also an excellent resource.
Preemie-child: Support for parents of children born premature who are now school age
Preemie-Child is an email discussion group for parents of preemies who are four years old or older. Read here to find out how to subscribe.
Adultrop
This list provides adults with ROP a place to discuss their concerns and share experiences.
If you have comments or suggestions about this page, please contact me.
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