Let me teach you about my premature baby and tell you how my life has changed...

A Letter To My Friend,I share this letter with you because you care about me.When someone we care about faces a trauma, it is natural for their friends to want to help. When we do not totally understand what is going on, it makes it that much more difficult to help. You probably are having trouble understanding what is happening, what caused this to happen and why I am having such a rough time coping with the birth of my premature baby. Let me explain what is happening...Prematurity Facts...Eleven percent of all babies are born prematurely (before 37 weeks of gestation). 7.4% of babies born in 1996 were Low Birth Weight (LBW) Infants ( less than 2500 grams or about 5 lbs. 8 oz.). This is the highest level reported since 1975! Nearly one and a half percent of babies born in 1996 were Very Low Birth Weight (VLBW) Infants (less than 1,500 grams or about 3 lbs. 5 oz. at birth). This rate has been essentially unchanged for the last two decades at least.Twins, triplets and other multiples have a greater chance of arriving prematurely. Black women have the highest rate of preterm birth, double that of white, native and mexican americans. In 1965 there were 16 NICUs in the US. In 1993 there were 794 with 13,873 beds. A conservative estimate of the total cost of care for infants and children born at low birth weight is $6 billion, exceeding the annual cost of AIDS.There are many reasons that a pregnancy can end with premature delivery: preterm labor, incompetent cervix, premature rupture of membranes, placenta previa, toxemia are among the most common. The greatest majority of preterm births are not related to something the mother did or did not do. It is rarely the mother's fault. An increasing number of premature babies survive and thrive today. The statistics show that 20% of 24 weekers, 50% of 25 weekers, and between 70-80% of 26 weekers survive their early birth. The rates are much higher for babies born above 30 weeks, hovering around 95%. The smaller the baby, the more likely it is that they will encounter at least some type of developmental or learning disability, but this is not written in stone. There are many babies who come out of prematurity unscathed. (By no means should this information imply that a preemie is destined to an abnormal life of disabilities. It merely suggests that they have a higher likelihood of face greater challenges than the full-term baby. These challenges are often a result of the trauma the body suffered from the prematurity and center mainly around : impaired physical skills (such as Cerebral Palsy), learning disabilities, vision problems, feeding difficulties, or hearing problems. Many premature babies qualify for assistance from federal programs, such as Early Childhood Intervention, or take part in the special education programs offered in public schools. Remember!!! Each child's outcome will be different, depending on how their body coped with the preterm birth. The ability to accurately predict how a baby will develop cannot be determined by their birthweight, time in the NICU nor weeks of gestation. These factors are only indicators of the possible outcome for a preemie.Why Is Having A Preemie So Upsetting?The birth of a premature baby, even when it is expected, is the loss of very important dreams. It is the loss of the perfect pregnancy, the right type of birth, a healthy, perfect baby that can come home with you, a bright start to a new family. It is also involves a loss of optimism about the future. Worry about current and future development cloud my vision. I worry about what he will face later in life. And although my baby may have great odds of survival, I may still be fearful of losing him. Even with great odds like 90% survival mean that one baby in a room full of ten will not go home with their parents. I am worried I could be that one.I am angry. I am mad that this happened to me, especially if I was exceptionally careful about the pregnancy. I am mad that I lost control over my life and have placed my baby in this predicament. I am mad that I cannot take my baby home or even hold him. I am mad that people are not celebrating his birth, until he comes home and is "safe" from the arms of death. I am mad that others cannot understand how I feel. Guilt and failure are everywhere. I feel like I did something to cause this. I feel like I should be able to help my baby, not just sit silently by. I feel like a failure as a mother, daughter and wife. I feel like I failed at pregnancy, childbirth, breastfeeding and caring for my baby.I may still be in shock that this has really happened to me. I may repeat over and over the story of the birth. I may relive the early days with anyone who will listen. I may still even have OB appointments listed on my calendar and maternity clothes I was going to wear hanging in my closet!Mostly, I feel a total lack of power. I have no control over my body, my emotions, my baby's care, my baby's health. I don't even know how to calm my baby when he is uncomfortable. And I don't have any control over what will happen to my baby.Why Does My Advice Upset the Parents?When there is nothing specific to do to solve another's problem, we try to give helpful advice. Often we tend to draw on past experience or on the experiences of others. The truth: The preemie experience is unlike any other and comparisons only minimize the severity of it.Reason #1:Due to the nonstop advances in the field of neonatology, the survival rate of preemies has increased at drastic rate. Babies that did not survive 5 or 10 years ago, are now doing so and doing it well. So comparing the experiences of another preemie with this baby does not add information and support to the parent. Reason #2:Comparing the NICU hospitalization to another child's sickness or surgery is not appropriate (especially if the child is not a preemie). They are as different as apples and oranges. Your well-meaning advice is an attempt to transform an extremely complicated situation into a simplistic little problem and overlooks all the many losses that accompany a preterm birth.Reason #3:Advice on coping with pregnancy, birth, or a newborn baby doesn't apply as well. The feelings surrounding preterm birth are not the same as a fullterm pregnancy and birth. Moms would have liked nothing better than to endure the final months as big and pregnant. Comparing her situation with those of other full-term moms minimizes the trauma and grief she feels and makes her feel even more isolated, angry and misunderstood.Know that the parents appreciate your advice as an effort of support and consolation, but it is not useful, pertinent and accurate given the nature of the problem, unless you have actually been through the same situation of preterm birth. Answer:The best help you can provide is to be understanding and supportive. It is easier to do this if you can appreciate how devastating it is to have a preemie. When you speak with the parent, try to empathize with the burdens on their mind and in their heart. There is nothing you can do or say to make the baby better and take away the parents pain. What Can You Do For Her?When a parent feels so misunderstood and alone, they often begin to fear communication with others. Parents begin to fear that advice, suggestions, or comments will make them feel even more upset and despondent, instead of supported and understood.The most important thing to remember is that the parents are very distraught and very worried. Listent to what they have to say, but do not judge. Do not belittle their feelings or attribute them to the baby blues and hormones. Reactions to a premature birth is much more than a hormonal response. Don't try to pretend that everything will be okay. Don't sell her on fatalism with statements like, "What will be will be." If that were truly the case, what's the point of using medical technology to try to accomplish what nature cannot?Your willingness to listen can be of great help. Premature parents feel cut off from other people. Your ability to listen and support the parents will help them handle the stress they're experiencing. A baby's premature birth is one of the most difficult situations parents will ever have to deal with.Problem SituationsJust as an ordinary room can be an obstacle course to a blind person, so can the everyday world be full of hazards for a premature parent - hazards that do not exist for women with full-term babies and children.Some of the common obstacles that can cause increased pain and suffering in a parent ...* seeing mothers with their new babies* watching parents take home their newborns* catching view of a very pregnant woman* visiting the obstetrician's office for an appointment* hearing other's birth stories or complaints about late pregnancy* seeing babies at the store, passing them in cars, watching them stroll down the block or play at a park* hearing news of a friend's pregnancy* having to be around other pregnant women* passing by a childbirth class* attending showers or a bris* family gatherings, where babies and children are present* a breastfeeding mother* watching TV and being bombarded with baby commercials and programs that show pregnant women, birth, and newborns in danger* receiving and reading parenting magazines* reading parenting booksAs you see, there is no escaping painful encounters when you are a parent to a hospitalized premature baby who is not home and healthy.The Bottom LineBecause these parents, your friends, have had a premature baby, life is very stressful for them. It will be for some time, even after the initial difficulty of hospitalization ends. They will have to deal with isolation from germs, developmental concerns, and other health complications that often challenge a preemies first year of life.Your friends are doing their best to cope. Please be understanding. Sometimes they will be depressed. Sometimes they will be angry. Sometimes they will be joyful. Sometimes they will act in totally crazy ways that seem to defy explanation. Most times they will be physically and emotionally exhausted. The will not be the same old people they used to be. The parents have no concrete answer to when, or if, their problem will resolve. The fact that babies often ride a roller-coaster of progress and setbacks as they journey toward home only adds to the emotional turmoil. It is certain the NICU trip will come to an end, but when and how is often unknown. Afterwards it can be a long time before many of the parents questions about health and developmental concerns can be answered. They will not know the repercussions of the early birth for years to come and this can continue to plague their emotions at certain times, especially anniversary dates. During this time, though, they will form a close, loving bond with their child. They will accept any and all challenges and limitations their child meets. They will grow to see their child as perfect, regardless of any disabilities, for the love of a child is perfect. Never will the parent be the same as they were before the birth. They will be forever changed by the event. You will have to accept this as a result of the premature birth if you wish to continue supporting them as a friend. Your friend wants you to stretch and accept the new person she has become. She needs your support. Please care about her. Please be sensitive. Please be a friend...

with much affection,a preemie parent