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Dealing with tragedy after birth

“What did I do to cause this?” is the most common question that parents of babies who are severely ill, deformed, or do not live ask themselves and their physicians. No matter what the cause, taking on guilt and punishing yourself for what you may have done to contribute to the baby's condition is not going to change the situation at all. Blaming yourself for having chosen a particular doctor or hospital or other place of delivery which may or may not have led up to the tragic result also serves no purpose. It will only make things worse because your feelings affect the way you function and deal with the problem as well as how you relate to the child.

Another common reaction after the birth of a deformed child is the thought that there must be something abnormal about you - especially if this was a first child.

“What's wrong with me for creating such a child? Something inside of me did that to Lucille. Because of me, her own mother, she will have to live with this the rest of her life.”

When something unfortunate occurs it is natural to want to find a reason for it. An explanation somehow helps to mend our emotional wounds. Being able to place the blame on someone, even ourselves, gives some semblance of satisfaction; it helps to close the door on uncertainty and unanswered questions. But continually living with blame is living with self-hatred and is destructive. It is a waste of your energies that can otherwise be put to better use to reconstruct your life and go onward, dealing positively with the situation as it is.

The natural mother-infant and father-infant bonding process by which attachment to the new baby is formed is somewhat interfered with in the case of a severely ill newborn. When the parents know that the infant's life is in danger, they may feel reluctant to become too attached to the baby for fear of hurting too much if the child does not live. So the natural instinct might be to hold back and not give of oneself and minimize visits to the nursery.

“I couldn't look at him too much. I had to brace myself for the possibility that he wasn't going to make it. I couldn't get myself to love him when I felt he was probably going to die anyway and my heart would break.”

“She was so tiny and so weak and the doctors prepared me so well that I shouldn't keep my hopes up. 'Don't get too attached to her,' my mother warned, and even though I knew intellectually that this baby needed much more love than normal babies, something inside of me kept my feelings back. Kind of self-protection, I guess.”

This same detachment may occur after the birth of a healthy baby if a previous child had lived several weeks or months and then died. The memory of having been attached to that child and loving him and then the profound loss felt afterward can prevent an open flow of loving feelings toward the new baby.

Reverses often occur when the infant who was expected to die lives. This unexpected happening can result in extremely mixed emotions. After having adjusted to and thereby in effect “mourned” the baby's death in advance, it takes a while and some concentrated effort to establish the parental-infant bond that had been delayed. To establish this bond there must be enough trust and belief that the child will now, after all, live - and that it is now safe to invest loving feelings without fear of the child's demise.

Seriously ill babies are not given to their mothers during the hospital's scheduled feeding times, nor can they room-in; of necessity, they must be kept and cared for in the nursery. This separation of baby and mother accentuates the mother's feelings of loss, of being different from the other mothers, and her tendency to emotionally detach from her baby. If she shares a room with mothers whose babies room-in with them or are brought in for feedings, her feelings of being different are dramatically reinforced several times each day.

If parents of a sick or premature infant desire to visit the nursery to see and hold their baby, all efforts should be made to encourage and accommodate their desires. A sick baby or one who is in a special care unit because of prematurity or for observation after a Cesarean delivery needs more love and attention than usual, simply because he or she is isolated. In addition, the mother of such an infant may have a strong need to be needed by the baby. During her pregnancy, the months were spent waiting to become a mother and to care for an infant. Suddenly, after all the hoping, waiting, preparations, expectations - there is no baby to care for. The mother should be encouraged to come to the nursery. If the baby's condition allows, she can feed, fondle, talk or sing to the baby while still in the special care unit. The baby needs mothering as much as the mother may need to give mothering. (Even if the baby has an IV or nasal tube it may be possible to hold him or her. Ask the nurse how to best accomplish this.)

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Your baby may need to remain in the hospital for additional care for several days (or longer) after you go home. Such a situation is likely to provoke feelings of emptiness, loss, and depression because of the enormous disappointment at having to go home without the baby. This is especially true if this is your first baby. The previously prepared infant furnishings in the house serve to remind you constantly that your baby is not with you

“The worst time for me was the two weeks I had to leave the baby in the hospital. I visited him every day and spent a lot of time there in the nursery, but when I had to leave and come home and felt the emptiness of the house and every time I passed the bedroom where his crib stood empty, I'd choke up with tears.”

“I knew my baby was going to be all right. She just had to stay in the hospital until she gained some more weight. But that didn't make me feel any better when I was at home Without her. Everyone told me I should use the time to catch up on things, especially sleep, because when she'd come home I'd need the energy. But who could sleep!”

“The only thing that helped while the baby was in the hospital was keeping busy. My friends and my family kept me constantly involved going places and doing things and being with people so there'd be less time to dwell on not having Matthew home with us.”

If your baby needs special care that cannot be adequately provided in the hospital in which you gave birth, he or she may be transferred to a specialized infant care unit in another medical center. Your being in one hospital while the baby is in another can lead to feelings of depression because you cannot even see your baby to reassure yourself that everything is all right. In addition, it may be difficult for you to reconcile your recent labor and delivery experience with the existence of a baby you may only have seen for a few minutes, If at all. It might be best for you to ask to be discharged as soon as possible, so you can visit your baby. Until you can be discharged however, perhaps you can be given the telephone number of the special care unit so you can be in touch with those caring for your baby.

If a child is severely deformed, some new parents, in addition to any feelings of guilt or self-blame, tend to feel very uncomfortable while with the baby in the presence of others - in the hospital or, weeks later, walking down the street, in the pediatrician's office, in the supermarket, etc.

You might actually feel embarrassed when people – adults or children - look and sometimes even stare and point at your baby. Then you might feel very guilty for having felt embarrassed in the first place. This is a common reaction:

“How could I have been embarrassed? What was the terrible shame? Robert couldn't help how he looked and certainly no one wanted him to look that way. And neither he nor I did anything foolish to make It happen, so why should I feel that way? And yet, that wave of shame came over me!”

We all want perfect babies with perfect bodies and minds. Not producing such perfection, we tend to feel that we have failed, that something has gone wrong and that it is a reflection on us and our abilities. However, all the guilt, shame, worry, and blame in the world will not change the situation. And although we cannot prevent or stop the feelings we feel, we can decide not to indulge in self-hurting thoughts. We can decide not to encourage or prolong them to the point where thinking about what happened is no longer a necessary and natural relief but instead becomes a negative factor causing more unhappiness in our lives.

“One of the worst feelings I had was when Nathan was so seriously ill in the hospital and his living was a matter of touch and go and there I was on the outside, living. And if I would forget for a moment about Nathan and laugh at something funny someone said, I would suffer so much. It was like how could I laugh, how could I have fun and enjoy anything while my poor little baby was so sick.”

“In order to go on, I had to have some relief. It took me a while to realize that a change of scenery (away from the hospital and the baby), a change of subject, going to a movie, listening to music, lunching with friends was medicinal!” Also, there is a tendency for the parents to overlook each other's feelings during this period of intense interest in and concern for the baby. Remember that each of you needs love and understanding from the other - especially in cases of long hospitalization of the baby.

Occasionally, an infant is stillborn or so severely ill or malformed that the baby lives only a short period of time after birth or dies some time after. If her infant has died and the mother remains on the same maternity floor of the hospital, exposed to happy mothers, fathers, gift-bearing visitors, and the acute awareness of the baby nursery down the hall, this further accentuates her loss and can be devastating.

“There I was, empty. No baby within me. My breasts filling up with milk for a baby who would never drink; my arms aching for a baby I would never hold; my stitches a constant reminder of a hard labor and the baby who had passed through my birth canal. I had nothing to show for my labor. And every time my roommate held her baby, fed her baby, opened another baby gift, or had another congratulatory phone call, I wanted to scream. But I cried and cried. It was cruel, seeing all those babies so soon after mine was taken away.”

Accommodations should be made on another floor in such cases, and early release from the hospital should be arranged if at all possible.

If your infant dies, it is important for both grieving parents to be encouraged and allowed to do just that - grieve. There is often no solace in sentiments such as “It was better that way … it was meant to be … ”

Everyone reacts to grief in his or her own way. Allow yourself to cry when you feel like crying; don't worry about the reactions of those around you. If you think that seeing your infant will help you adjust to the reality of his or her death, by all means ask to do so. Whether or not you should see the baby is a subject of controversy. Some people - professional and non-professional - believe that if the infant was malformed, it is better that you not see him or her so you will not be haunted by the memory afterward. Others believe that if you do not see the infant, your imagination can conjure up far worse images than reality imposes, thereby making you suffer more. We believe you should first discuss the baby's appearance with the doctor and then it should be your choice – not the hospital personnel's - whether or not you see the baby. And if you want to be moved off the maternity floor, speak up.

Some parents find it comforting to refer to the baby by the name they had chosen during pregnancy. Others prefer not to. Some have a formal burial service, feeling that going through the rituals surrounding death helps to resolve their experience by allowing them to mourn the baby as their infant who died instead of removing themselves from the entire process by allowing the hospital to make arrangements in which they do not participate. Other people prefer not to be involved. Whatever your desires, it is crucial that you keep in touch with each other's needs and feelings. Men in our society are not encouraged to cry or express their feelings and often believe they have to be “strong” to help their mates. Not true. You both will need to help each other through this period with as much love and understanding as is possible. Communication is also essential at this time so misunderstandings can be avoided. Bereaved parents are under exceptional stress and do not need the additional pressure of friction between themselves. The death of an infant can put a huge strain on a marriage. One partner may be so upset and involved in his or her own grief that the other partner's feelings may not be considered. Feelings of guilt for what happened can lead to blame and, before long, both bereaved parents may find themselves working against each other instead of side by side. Reach out and give comfort to each other. Both of you are hurting.

Unfortunately, the medical and nursing staff at the hospital may feel uncomfortable talking to you or dealing with you about the tragedy and you might interpret this to mean they are unfeeling or nonchalant. Or, in their uneasiness they may say or do something rather inappropriate. A casual remark or the use of a word intended to help you may resound like thunder and hurt you to the quick:

“After my baby died, nobody wanted to talk to me about it. They decided it would be better that way, for me. Even my husband thought he was doing me a favor by telling the nurse not to discuss with me what arrangements they would make for the baby. But I wanted to discuss it and I asked the nurse about it and she said not to worry, they'll 'dispose of the child' for me. Dispose! As though she were talking about an old piece of clothing. The thoughtlessness of using that word to a woman whose infant had just died!”

Grieving parents are not helped by well-meaning people who avoid the subject and stay away. The expression of sympathy to parents mourning the loss of an infant is vital. Yet people tend to retreat for fear of “not knowing what to say.” They don't understand that they need say nothing more than, “I don't know what to say. I want to cry with you.”

Often, grieving parents feel an extreme sense of isolation and cannot understand why friends and relatives are not calling or visiting. They may assume that no one cares enough to spend some time with them and help them through the grieving process. Very often they need and want to talk about their tragedy, but no one introduces the subject for fear of upsetting the couple and bringing on tears. But tears are a necessary part of the grieving process.

If people seem to be avoiding you in your time of need, try to understand that they are feeling helpless and do not know how they can console you. It might be necessary for you to make the move and call friends to let them know you want their company and need to talk. Allowing the tears to fall and the words to spill out can be surprisingly relieving. Simply expressing your feelings and thoughts can be marvelous medicine for your wound.

If there are other children in the family, remember that they also have a need to express their feelings. They too go through a grieving process and need comforting. They need to talk about what happened and be reassured that everything possible was done to help the baby. Keep in mind the possibility that siblings may have felt resentments toward the new baby and may be suffering with the thought that they were responsible for the tragedy, merely by thinking negative thoughts. And they may be terrified at the thought that they could die too. The more you can get them to verbalize their fears and feelings, the more you can understand and help them through this difficult time.

If your baby was a victim of Sudden Infant Death Syndrome (SIDS) - a fatal condition occurring to apparently healthy and thriving babies - usually between two to six months of age - the shock of this unexpected death can be devastating. Although self-blame is common, it is useless and invalid because to date there is no known cause nor any way to predict this tragic occurrence.

It is common to experience insomnia and nightmares after losing a baby. This seems to be a part of the adjustment period. It may be difficult to work or even to concentrate on anything for any length of time because your mind tends to wander. You may experience a loss of appetite and may need to force yourself to eat in order to maintain your health. If this is the case, It is advisable for you to eat small quantities of easily digested foods several times a day instead of the traditional three full meals each day.

It is normal to think you hear your baby crying in another room and then realize the cries were in your head.

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You may find it unbearable to be alone for hours in the house where the baby was to have joined your family. Make it a point to have a friend or relative spend time with you each day for the first few weeks until you are better able to adjust to and cope with the reality of the situation. Plan in advance to do something with someone each day. It will do you no good to isolate yourself and dwell on the tragedy. Ask yourself: Will making myself miserable, cutting myself off from the world, and denying myself some pleasure make a difference in what happened?

“After our baby died, I didn't want to go anyplace where I'd have fun because I felt like I was betraying his memory. What kind of mother am I if I could forget so soon? But I learned by going to grieving-parent rap sessions that I was doing a very common thing - punishing myself and that all my sadness wouldn't help my baby and it wouldn't make me a better mother, so why be sad? And what about my other children? Don't they count? Shouldn't they get some smiles out of me? It helped me so much to exchange feelings with other parents.”

Whatever the tragedy, being in touch with other parents who have had the same or similar experience - sharing and exchanging your feelings as well as practical advice for day-to-day living - can do wonders for you. Learning how other parents cope; maintain family and social lives, handle the stares, questions, and remarks of strangers, friends, and relatives and through it all developing an ability to enjoy life - even managing a sense of humor to help them survive the difficult times - may surprise and inspire you.

“It didn't change things. Anthony still had spina bifeda (exposed spinal area) and we still don't know if he'll ever walk, but the group has been a blessing. We're with people who understand. It's so supportive. I don't know how we would be managing without those people, who've become our dearest friends.”

Ask your doctor, childbirth educator, hospital, or the March of Dimes to put you in touch with a local self-help group for this purpose. If there is no such group available, you can ask to be put into contact with other parents like yourselves and you can get together informally on your own to discuss mutual feelings and problems.

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