Support Network

Support Networks


Reaching out to someone when you need support and counselling is the first step. Sometimes, it can be hard to know where to turn to for help. We have included some websites that you can look at and see which one is best suited for your needs. Your GP and Public health nurse are greats contacts in the community and would be able to listen to your needs and help direct you to the appropriate body or counselling service.

We are in the process of liaising with each of the hospitals that have NICU’s to ascertain what services they have for parents from the NICU. Some of the hospitals have counsellors, psychologists and medical social workers, pastors, all of whom are qualified to give you the professional support you need. We have spoken to one or two of the hospitals and they have confirmed that parents can continue to use the services of the hospital long after you and your baby has been discharged. Sometimes it’s only when you are all discharged that you have time to reflect upon the journey that you have been on since the birth of your premature baby. We will update this section as soon as possible.

We at Irish Premature Babies are committed to trying to get parents the support and help they need to help parents come to terms with the emotional turmoil so many of us experience when we have our preterm babies.

We are delighted to announce that we have set up a structured support network of volunteers around the country who have kindly offered to listen and have an informal chat with any parent or family member who has experienced having a premature baby. Sometimes we need to talk to people who understand the rollercoaster journey that ensues with a preterm baby and help you feel not so alone and isolated. Further details of our initiative can be found under the “Buddy System”.

We have also looked at other areas where parents can get professional support and also at areas where you can just chat or ask opinions of other parents of premature babies. There are also some links where people can access low cost counselling.

Understanding the Need for Parent Support in the NICU

By Dianne I. Maroney RN

Giving birth to a premature infant can be a devastating life experience. Along with the joy and incredible love a parent feels, comes many overwhelming emotions such as fear, guilt, anger, and loneliness. Surviving and coping with these stressful emotions is critical to your emotional and physical health.

Every parent copes differently with these stressful times. There are even unique differences in the way husbands and wives cope. Men often take the idealistic approach, trying hard to see the positive in the situation. They may need to try and “fix” whatever they can, and they may have a hard time showing their emotions. Women, on the other hand, are frequently very emotional and more “realistic” about the situation, and they actively seek support from those around them.

Whatever your coping strategy may be, it’s important to understand that you are grieving in your own special way, and that having a premature infant is an extremely traumatic life event that will create many levels of different emotions. Studies have shown that parents (and their preemies) will benefit from support throughout the hospital stay, and after their babies are discharged home. Try to find others around you who have experienced having a preemie, such as a support group in the NICU or even on the internet. Your family and friends may or may not understand what you are going through; try and use the support of those who you feel have compassion for your situation. If needed, don’t hesitate to seek professional help. You are not a failure for seeking support, you are only helping yourself and your child. 

NICU Veteran Support


Veteran Support

We have set up a network of parents nationwide all of whom have lived the NICU experience with Premature Babies. The aim of this network is to provide support to families of premature babies who may wish to talk to other families who have had premature babies in the past. Sometimes we just need to talk to someone who really knows and understand what it's like to have a premature baby. There has been research done in the US that has shown the parents who are matched with a NICU veteran are able to deal better with the emotional effects of having a baby in the NICU and parents were less likely to suffer from stress, anxiety or depression.

Our network of volunteers consists of parents whose babies were born at 24 weeks and upwards, parents who have had multiple premature births, parents whose children continue to experience medical conditions as a result of their premature births and parents whose little angels did not come home from hospital.

If you would like to avail of this service please contact us.  All your details will remain private at all times and only the co-ordinator and the volunteer will know your personal information.

You can reach us at support@irishprematurebabies.com , or through our feedback section on the Contact page.



If you would like to offer support and help to new parents of premature babies and become a NICU Veteran Volunteer, please down an application here and send it to Irish Premature Babies  at Carmicheal House, North Brunswick Street, Dublin 7.

This system is not a counselling service nor do we offer any medical advice, we only provide the opportunity to have an informal chat with another parent who understands what is like to have a premature baby and all our volunteers are aware of these guidelines. If you would like to talk to a professional counsellor and don't know where to get help, please contact us and we can point you in the right direction.

Talking on the phone is not for everybody and emailing may be easier for people to connect with others. The same criteria applies to the email support, all queries will be dealt within 24 hours and you will be matched to the most suitable volunteer. 

Counselling links


We have focused on three main areas in terms of getting support:

Bereavement
Traumatic birth
Counselling
General counselling
Low cost counselling
We will be updating this section on an ongoing basis.

Bereavement

www.isands.ie

Irish stillbirth & neonatal death society provides support & information to parents whose babies pass away around the time of birth.
Tel : 01-8726996

www.anacara.ie

Anacara is a national support group set up by bereaved parents. It offers help and support for bereaved parents and siblings.
Tel:  085-2888888       

www.miscarriage.ie

The miscarriage association of Ireland provides support and help to parents and families affected by miscarriage.
Tel: 01-8735702

Traumatic Birth

www.aimsireland.com

Aims Ireland is an association for improvements in the maternity services in Ireland. On their website, the birth healing section deals with all aspects of traumatic birth.
Email :support@aimsireland.com


Post Natal distress association of Ireland
The Post Natal distress association of Ireland provides information & support for those with post natal depression.
Carmicheal House, 
North Brunswick Street, 
Dublin 7 
Tel : 8727272

www.birthtraumaassociation.org.uk

The birth trauma association provides support to women suffering from post natal post traumatic stress disorder or birth trauma. Amongst other services they provide email support from parents who have been through a birth trauma.

General counselling & low cost counselling options

General counselling

www.irish-counselling.ie

The Irish association for counselling and psychotherapy is a national organisation that sets and develops standards in the practise of counselling and psychotherapy. The IACP is a registered charity and represents over 3000 members. The have an online directory where you can search for a counsellor or you can contact them by phone. All counsellors are accredited.
Tel :01-2723427
Email: iacp@iacp.ie

www.psihq.ie

The Psychological Society of Ireland is the learned and professional body for the profession in Ireland. It has over 2000 members and you can search on the site for a psychologist and make contact yourself or you can contact them by phone. All psychologists are accredited.
Tel: (01) 4749160
Fax: (01) 4749161
Email: info@psihq.ie

Low cost counselling options

In light of the recession in Ireland private counselling sessions may not be accessible for everybody. So we have found a couple of areas that provide low cost counselling services. The bodies that we have included are associated with training colleges for counselling and psychotherapy.

www.pcicollege.ie/Counselling/82

PCI College provides a low cost counselling service to various local communities. Low cost counselling is a not for profit iniatiative of PCI College. The service is staffed by mature adults who are currenty undergoing training in counselling and psychotherapy. A suitable Low-Cost fee is agreed (between €5 and €15) with the caller so that the service is available to all, regardless of circumstance. There are four different people to contact based on different locations around the country.

www.tivoliinstitute.com/news.asp

The Tivoli Institute offers the following “a psychotherapy service with qualified professional therapists and a psychotherapy service at reduced cost with a senior trainee from the Institute's professional training programme. The average fee under the reduced cost service is €20 (negotiable) per one-hour session. The fee can vary depending on circumstances. The therapists all have considerable experience in the caring professions, or equivalent, and work under the supervision of the Institute's professional training staff. Sessions take place in Dublin city centre, Dun Laoghaire and in Galway city centre.” For more information and contact details see www.reducedcostcounselling.com

www.thecounsellingcentre.ie

The Cork based counselling centre offers a wide range of serives for people using the centre. Nobody is refused counselling because of an inability to pay, the centre operates a sliding scale in accordance with people’s ability to pay.



The websites listed here are not under the control of Irish Premature Babies. We are therefore not responsible for the content of these sites and they are provided solely for the convenience of users of this site. 

Support in the community


Here are some of the groups and contacts in the community for parents, if they would like to meet other parents and especially other parents of premature babies. We hope to add some more details to this list shortly.

Coombe Neonatal post discharge group.

The Coombe Women and Infants University Hospital in Dublin, run a drop in centre where parents can bring their babies every second Saturday of each month between 11.00am and 1.00pm. This Neo-natal post discharge group was set up by Barbara Whelan and Margaret Mason. It is an excellent service for parents who attended the Coombe, it has been in operation since 2006 and is still going strong. Contact the hospital directly for further details: www.coombe.ie

Premature baby & parents days out.

For over three years a group of parents from a premature baby section in an Irish parenting website have been taking turns to arrange get togethers several times a year. The meetings take place in the Gresham Hotel in Dublin and parents from around Ireland travel to meet up. They have special days including Christmas, when Santa comes to all the premature babies. It’s a great way to meet other parents, make friends and talk to people who really understand what it’s like to have a premature baby. Details are posted on the premature baby section on Rollercoaster, Magicmum and Eumom. We will be posting details of these days out on our Facebook page and this website.

Parents & toddler groups.

When you leave the NICU, it may not be possible for you to attend parent and baby/toddler groups in the early days when your baby comes home. You could discuss with your baby’s medical team when they feel it will be ok for you and your baby to attend public groups like this. These groups can be a good way of meeting other people with children the same age as yours who live near you. These groups were traditionally aimed at mothers, but fathers, grandparents, guardians and minders are also invited to attend. Some of these groups are held in local community centres or church halls. To find out about parent and baby/toddler groups in your area, contact your GP or public health nurse.

Community Mothers Programme.

The Community Mothers Programme is a programme run by the HSE, and described as "a Parent Support Programme in which friendly local women known as Community Mothers carry out monthly visits to first and second-time parents in their own homes. These visits are made by appointment and they focus on health care, nutrition and the baby's overall development. The Community Mothers are volunteers and are guided and supported by Family Development Nurses.The Community Mothers Programme recognises parents as being the most important people in their baby's life."

For more information, contact:

Community Mothers Programme and Family Support Service,
Park House,
North Circular Road,
Dublin 7

Tel: (01) 838 7122, ext. 246/221.

"Loss" of a pregnancy

Ambiguous Loss 

Experiencing Joy and Grief after the Birth of a Premature Child

By Kimberly A. Powell, Co-Author of Living Miracles

Most people experience the loss of someone or something of great importance several times during their lives (Bonanno, 2001). When grief is related to loss of an experience, not a death, how does one grieve or cope? Boss (1999) coined the term “ambiguous loss” when studying the wives of pilots missing in action in Vietnam and Cambodia. They had no information and no official verification that anything had been lost, thus were filled with conflicting thoughts and feelings. This ambiguity aptly describes the feeling of loss after a premature birth. The parents have a live baby, thus there is no proof that anything was lost. Furthermore, society expects joy at the birth of a child, so the loss that parents of a newborn premature baby feel is confusing. The final trimester of a pregnancy is a time for the mother to prepare physically and psychologically for the birth. Since prematurity interrupts the natural order of a pregnancy with little to no warning, parents are often in shock and confused about their role asking: “Am I really a mother?” “If my child is in the hospital, how do I act as a parent?”

Survey Method
A total of 74 questionnaires were sent to potential interviewees and 48 (65%) of them responded. The surveys represented the experiences of parents of 56 preemies because eight of the parents had more than one preemie or had multiple births. In fact, within the responses there were two sets of triplets, seven sets of twins, and four women who have had more than one preemie. The gestational age of the preemies ranged from 23 to 34 weeks, with the average age being 28 weeks. The current age of the preemie ranged from 5 weeks to 16 years.

Results

Reading the parents’ narratives of the birth of their preemies, it became increasingly clear that they were attempting to manage an “ambiguous loss”. The respondents were undergoing various emotions of grief because they were mourning the loss of a full-term pregnancy. The participants were shocked, saddened, and angered that their child was suffering from a serious medical condition and may die. However, they were unable to experience the emotions of grief to their full extent because their baby was alive. The participants did not know how to communicate and accept their grief because they were to be celebrating their child’s birth. This “ambiguous loss” resulted in an overarching “joy-grief” contradiction.

The Joy-Grief Contradiction

As numerous participants explained, no one could truly understand what they were experiencing because of the complexity of being torn between mourning the loss of “normal” birth and celebrating a new life being brought into the world. Although the possibility of death and future health issues were present in the participants’ minds, they were unable to experience grief in its entirety because their child was alive. The parents did not know how to feel their grief or if they should even be allowed to grieve because they were suppose to be experiencing the joy of their newborn baby. One parent described the difficulty of enabling herself to grieve even two and a half years after the birth of her preemie. “My healing process has only recently begun…I couldn’t understand why I felt such grief and didn’t feel that I had the right to grieve as my son is alive and doing relatively well”.

This joy and grief tension was often complicated by extended family members’ confusion over the same feelings. “Family members were supportive,” Nancy explained, “but did not treat me like a ‘real’ new mom. While I did receive flowers etc., and many people visited, I felt it was because of illness and not because of joy at a new life. I just wanted to be treated like any other new mom”. While many parents wanted to be treated like any other mother or father, it was difficult for family members to know how to communicate their concern to the new parents.
Challenges to resolving ambiguous loss

An ambiguous loss offers a challenging context given that what is being grieved is often unclear or unevidenced. This uncertainty of loss “makes ambiguous loss the most distressful of all losses, leading to symptoms that are not only painful but often missed or misdiagnosed” (Boss, 1999, p.6). People hunger for certainty, so perceiving a loss when a premature baby is alive makes parents “more prone to depression, anxiety, and relationship conflicts” (Boss, 1999, p.7). Boss explains five challenges to resolving the grief of ambiguous loss.

1. Because loss is confusing and people do not know how to make sense of the situation, they cannot problem solve. Preemie parents have difficulty identifying a problem because of the certainty of knowing their baby is alive, yet the uncertainty of the health and future of the child. The parents cannot immediately rationalize why they are grieving.

2. The uncertainty experienced prevents people from adjusting by reorganizing roles and rules. Preemie parents were unable to assume the expected role of parent to a newborn after the premature birth. The uncertainty and corresponding lack of attachment to their preemie, because of the NICU technology, complicated family roles and communication. How does one act if not as a joyful new parent? How do family members appropriately communicate with the preemie parents?

3. A third challenge Boss (1999) poses is that people who are experiencing ambiguous loss are denied symbolic rituals, such as funerals, that ordinarily support a loss. When a new baby is born, parents are typically showered with cards, congratulations, visits from family and friends and a baby shower. The joy-grief dialectic complicates communication with family and friends. Family and friends do not know whether to react to the joy or grief involved.

4. Boss’s fourth notion is that, the “absurdity of ambiguous loss reminds people that life is not always rational and just; consequently, those who witness it tend to withdraw rather than give neighbourly support, as they would do in the case of a death in the family” (Boss, 1999, p.8). This explains why friends and family react in sometimes “inappropriate” ways.

5. Finally, since the loss is ambiguous, it continues and the relentless uncertainty makes people physically and emotionally exhausted. As Boss (1999) contends, people cannot start the grieving process because the loss really is not one; preemie parents both celebrate the birth and grieve the loss of a full-term pregnancy, not a “real” loss of a child., for the grieving is experiencing an unrecognized, internal loss that is difficult to communicate. This strain manifests itself in spousal and extended family communication. The mothers and fathers in this study grieved differently. According to the literature on grief, women want to talk more about their loss than men and seek out others more for support (Bohannon, 1990; Carroll & Schaefer, 1993). However, the willingness to openly discuss one’s feelings and work as a “team” helped the parents manage the tensions they faced. Bowlby (1980) also argues that successful resolution of grief depends on the strength of the parental relationship. Parents in the present study who mourned together and communicated it similarly found comfort and support in each other. Research suggests that parents not receiving support and comfort feel they have lost their spouse or that their spouse is the least helpful in coping with the loss (Peppers & Knapp, 1980).

Conclusions

Regardless of the gender of the parent, few people can deal with persistent ambiguity for long because the stress is overwhelming. Ambiguous loss is devastating and can have lasting traumatic effects (Boss, 1999). But, with effective communication, support, and resilience people can use the experience to learn how to live in difficult circumstances throughout life, balancing the ability to grieve what was lost with the recognition of what is still possible. As Boss (1999) states, “Ambiguity can make people less dependent on stability and more comfortable with spontaneity and change.... With ambiguous loss, the task is to let go, to risk moving forward, even when we do not know exactly where we are going” (p. 135).

.Copyright © Kimberly Powell 2001

References

Bohannon, J.R. (1990). Grief responses of spouses following the death of a child: A longitudinal study. Omega: Journal of Death and Dying, 22, 109-121.
Bonanno, G.A. (2001). New direction in bereavement research and theory. American Behavioral Scientist, 44, 718-726.
Boss, P. (1999). Ambiguous Loss. Cambridge, Massachusetts: Harvard University Press.
Bowlby, J. (1980). Attachment and loss (Vol. III). New York: Basic Books.
Carroll, R. & Schaefer, S. (1993). Similarities and differences in spouses coping with SIDS. Omega: Journal of Death and Dying, 21, 273-284.
Center for Disease Control. www.cdc.gov
Marble, M. (1996). “ Options on how to prevent premature childbirth controversial.” Women’s Health Weekly. Issue N, p. 10-11. 
Peppers, L.G. and Knapp, J. (1980). Motherhood and Mourning. New York: Praeger.

Kimberly Powell is the mother of a 28 weeker and co-author with Kim Wilson of Living Miracles: Stories of Hope from Parents of Premature Babies. New York: St. Martin’s Press. 2000. This essay is an excerpt from a research project completed with Tamara Golish at Luther College. The full results of the survey will be published in an upcoming issue of the Journal of Social and Personal Relationships.


Birth Memories - Differences of Premature and Full Term Birthdays

"I don't think that parents of full term babies can of full term can understand why we seem to need to grieve the small details; what to them is just a footnote is the body of the text for us."

By Mary Searcy

This article talks about the differences between my feelings and memories of my preemie's and full term daughter's births and birthdays. I've just been thinking this past week how my full term daughters July 9th birthday always seems to sneak up on me (to be truthfully, I have a hard time remembering what the right date is, I always want to say it's the 7th), and how with David's birthday, I relive the 5 weeks before his birth to some degree each year. I remember each event of those five weeks, and the dates seem to be forever etched into my brain. The strange thing is that with Katherine, I started restricted activity at 26 weeks, and even spent three weeks on bed-rest. So I wondered what the difference was, and I think my answer sort of sums up why we seem to be more traumatized over our premature births (especially those of us with relatively "healthy" preemies) than the average person would expect.

With my son, it was my first pregnancy, I was full of hopes and dreams, and at 6 months, I still hadn't taken any pictures of me and my belly, the holidays were coming up and I figured I'd have plenty of opportunity then, since I'd be gloriously and roundly pregnant on our first Christmas as a married couple. So going into preterm labor the week before Thanksgiving was certainly not what I was expecting. The five weeks of bed-rest, hospitalization, mag sulfate, etc. certainly weren't fun, but in the scheme of things, they really weren't so horrible. Then I was induced because I was leaking amniotic fluid, and I didn't have any support or answers; two days before Christmas, the young Labor and Delivery nurses just didn't want to have to stay in the room with me, what a downer to have to sit with someone in terrible pain (physical and emotional) with a less than perfect outcome, when there were goodies as the desk. At full termer David's birth, I felt dazed, empty, it was all unreal. David cried on his own a few seconds a full tamer birth (the longest seconds of my life), and DH and I join him, and I don't think any of us will ever be able to stop. Then David was handed to the neo, evaluated and briefly handed to me, before he's taken away. Slowly, I call relatives to tell them of his birth. I go to see him a full termer I'm cleaned up, then I'm sent back to the room on the special care floor that I've spent the past week in; the next morning the only reminder of what happened is the Polaroid taped to my bedrail.

The only thing worse than David spending 29 days in the hospital was the first year he was home; no one warned me that he might overstimulate, the the "mild" reflux he had could make him scream for hours on end (even though the pediatrician just looked at me and said he wasn't really crying that much, it was just colic, OK?). The time in my life when I was most vulnerable to feeling like a failure and my baby cried nonstop, I was literally surviving on a few 20 minute naps a day (and working part time, is it any wonder I was totally stressed out at work, especially with a boss who believed that women with children were unreliable, which I seemed to prove with my "inconvenient for the office" month plus of bedrest.) At times I really believed that my mom and her friend were planning behind my back to have David taken away from me because I was an unfit mother (in reality, my mom was telling this friend what a good job I was doing).

I'll always wonder if perhaps everything wouldn't have been so traumatic if that first year had been easier, if David had just been like a "normal" baby when he came home.

Fast forward 2.5 years, and once again I'm pregnant, this time taking every precaution to make it to term, or at least catch the preterm labor earlier and hold it off longer. I'm on bedrest for three weeks with my source of support cut off. But this time I make it to term. A full termer 18 hours of labor that isn't progressing, (and sciatic pain that the epidural won't even dent), we decide to start the dreaded pit. Just before midnight, my full term daughter is born, looking enormous at 7 pounds. A few seconds pass before she cries, but the silence is broken by my laughter a full termer the midwife declares it's a girl. When David was born, I just quietly said "hi, baby", unable to speak his name out of fear that he might not make it. This time I greet my daughter by name, laughing all the more when her cord is too short for her to be placed on my stomach before the cord is cut, waiting with greedy arms until she's handed to me. Immediately, I start calling relatives; I'm on top of the world. It takes a few hours before the room is cleaned up, Katherine is given her first bath (this time I get to watch!), and I finally get some food (which I didn't eat, too much excitement). Katherine is fussy that night, and unbelievably, I send her to the nursery for a few hours so I can get some sleep. In the morning, I sing and hum while I get both of us ready for a day of visitors. Yes I hurt, yes it was a difficult, stressful pregnancy, but this ceased to matter when my healthy baby was placed in my arms. That night, I realize that I've held my daughter more in the first 20 hours of her life than I held my son in the first two weeks of his.

The birth of my full term daughter was a major turning point in dealing with my feelings about David's prematurity. Up until that point, I suspected that I missed out on a lot, that there were losses I suffered, but I didn't know for sure. Katherine's birth confirmed this, there had been so many losses, I really *had* missed out on a lot. I started laughing when she was born, and deep in my heart, there's a part of me that hasn't stopped yet. And this allowed me to start grieving for what I really did lose when David was born, and start to move on. Sure, nobody gets the Gerber baby, but when you hold your beautiful, healthy baby, it really doesn't matter, it's easy to let go of anything that isn't absolutely perfect. When your baby is perhaps just as beautiful, perhaps not, and not healthy, and not placed in your arms, but taken away, all that you have is the imperfections filling the room. Even thought they may be insignificant and easily forgotten given a "normal" healthy birth, for us they are only more reminders of what didn't go right, only more things that we lost. So, I don't think that parents of full term babies can understand why we seem to need to grieve the small details; what to them is just a footnote is the body of the text for us.

Mary Searcy is the mother of a preemie and the owner of the Preemie Resource Page, an exhaustive list of publications, organizations, websites, and other resources for parents of preemies.

Prematurity Memories and Birthdays

When your baby is born prematurely, birthdays can evoke complex feelings.

By Allison Martin

When your baby was born prematurely, birthdays can evoke emotional and complex feelings. On one hand, there is the joy of having your child alive and with you now. On the other hand is the sadness and confusion of loss and grieve. Memories of the traumatic birth and survival in the NICU are present in a parent's mind, whether voiced or not. Thoughts of what might have been come closer to the surface around this time.

On the Preemie-Child mailing list we have the chance to share our joy as our children pass milestones and accomplishments, as well as our struggles and emotions over the difficult issues our children may face. Birthdays and other holidays are times when members experience this dual tug of emotions between the past and the present. The border between our dreams and fears and our present reality merge again on these dates.

Jacque describes how the mixture of feelings remains but the strength of the memories may slowly recede over many years. It truly becomes more difficult to remember how really tiny our babies were.

"Our twins were born at 29 weeks, 2 pounds 3 ounces and 2 pounds 11 ounces. I, too, was unable to see my boys for the first five days, except one time for five minutes as they were being transferred to NICU at another hospital. Their birthdays always brought mixed feelings... It seems to bring back all the memories of that rough time when they were so sick.
"But now they are 9 years old, and I notice birthdays are less sad these days. I'm always so thankful when I look at them and see what healthy, happy boys they are now. It's true, as so many of us say, you'd never know they were so tiny to start with and went through so much."
Janet shares her feelings at her twin's tenth birthday.

"Ten years ago this afternoon, my sister-in-law was videotaping their tiny, struggling bodies through the glass window of the NICU. Today, I took pictures of Jacob and his friends rolling and throwing bowling balls down the alley lanes!Clint was laughing nearby. He could not see the game due to detached retinas. He could not participate due to severe cerebral palsy.But he could hear it, and he thought the sound of bowling balls was as "funny" as the black-powder cannon blasts at our town's annual Civil War battle reenactment! Just hearing his laughter made me realize how far even Clint has come!
"Today, Jacob is little but physically strong, and as I write this, he is bouncing his basketball out in the driveway. His mind is bright despite a Grade 4 IVH, and he "escaped" serious disabilities -- no shunt, no seizures, no eye-related problems, etc. He does have common preemie problems such as hyperactivity, impulsiveness. and social immaturity. They are both a challenge and a joy, and their parents are just thankful it is 10 years hence!"
Michelle finds that faith and hope help her to focus on the celebratory aspects of her daughter's birthday.

"My daughter will be 5 in October. She too is a former 27 weeker, 2 pound 3 ounces. Although I can still vividly remember the stress of my hospitalization and then her NICU stay, especially the overwhelming feelings of having no say whatsoever in the turn of events, I always felt that at least God is in control, and for some reason, I recall never having any doubt that she would not only survive but thrive.
"You are definitely NOT alone with your mixed feelings. For me, I've always looked at Sammie's birthday as a victory day, and we celebrated her first birthday as such... It is hard to understand the why's of it all, but somewhere, there's hidden treasure in this preemie parenthood. I hope we all can keep the optimism necessary to find it."
Heidi's family has a unique solution for the events to commemorate the unique mixture of celebration and sadness for parents of preemies.

"The birth of a child is usually a time for happiness and celebration. For us parents of preemies, it is often a time of fear and uncertainty. I doubt many parents of preemies actually get a chance to celebrate their child/children's birth because we were just too scared.
"For the first few years of our daughters' lives, we celebrated both their actual birthday and their due date (which was a much happier occasion and also a day before they were released from the hospital).
"On their real birthday, we show the girls pictures of them on their second day. Fortunately, my father-in-law took a videotape in the NICU. I was too sick to go see them more than about 3 minutes a day the first few days. I think it is important for my kids to know where they started from. It puts things into perspective."
For parents who lose a twin or triplet at or after birth, the birthday party may be a time of bittersweet memories. Rene and Bethe describe how they cope with these memories of loss. Rene explains,

"My girls were born at 27 weeks in 1984 - and for five years I had a rough time on their birthday due to the loss of the triplet brother at two weeks of age. I never could understand why their birthday rather than the day he died bothered me so much, but it always did. That made it hard to be excited on their "special day" each year.
"After the birth of my now 9 year old, things slowly improved. But I still think about Daniel more on their birthday than on the day he passed away."
Bethe describes the depth of her feelings around her son's birthday.

"I get so deep in a well around Adrian's birthday, most likely due to the loss of his twin Harris after 28 horrible days. It's funny (not) I am so good about it all year long, am able to discuss my situation (if asked) with anyone without getting emotional, am so proud of my son and his progress, but it's so deep down, this pain, than it pops up again at birthday time. I totally lost it when they sang Happy Birthday to my son at Charlie Rockets this past July at out little family party. I always make his "friends" party at the end of July, to give me time to work out of the funk."
In closing, this mixture of feelings can pervade special events, but as as Allison explains, for parents of preemies birthdays can be also be special times of triumph and celebration.

"We also regard Alex's birthday as the celebration of a miracle. We feel blessed that he is alive and getting so big. For his first birthday we had about 80 people who had supported us over the first year over and had a barbecue in the back yard. Alex had just come off of his oxygen in time for the occasion. It was a joyous occasion. We had him in a big playpen in the middle of the yard so everyone could see him.
"Events other than his birthday seem to trigger the sadness and pain we experienced at his birth. Public events in the auditorium at school make us feel like we don't know whether to laugh or cry. We have great pride in what he does in his unique way - his spirit always shines through. We grieve at the gap between what 'is' and what 'might have been'. But on birthdays, we always remember the miracle and joy of survival over terrible odds."
For articles on preemie celebrations, visit this section: Celebrating Prematurity

Allison Martin, MPA, is the manager of the Comeunity and Premature Child websites. She has been involved in support for preemie parents since the birth of her son in 1988. Allison Martin is the listowner of Preemie Child, a support email list for parents of older children born premature, where the discussion in this article took place.

This document is copyright to Preemie-L. It may be reproduced in any format so long as it is reproduced in its entirety, including the contact link to the Preemie-L home page at http://www.preemie-l.org

When your baby is premature

Advice for new parents from Preemie-L parents

Having a premature baby can be a very lonely and frightening experience. In our communities there may be very few people who understand the specific problems facing parents of very early babies. Sometimes our babies are transferred to hospitals far from home and this can make us feel even more alienated and lost. 

Most premature babies stay in hospital until around the time of their due date, and some for many months after that. The daily routine of travelling, trying to live in the world outside the hospital, maintaining a milk supply and coping with the sometimes all-consuming fear and heartache can be profoundly draining. 

This advice sheet has been written by parents of premature babies in the hope that we can bring comfort to new parents. 


The early days 

The NICU environment is strange and stressful - the bright lights and complex life support machinery, the new language we need to learn to keep pace with our baby's care. For many parents it is like being dropped into a war zone where simply surviving will require every internal resource and every available support just to get through.

Feelings of guilt, grief, terror, anger and impotence are almost universal for preemie parents. So too are feelings of detachment. Very little in our lives prepares us for the helplessness we feel as we watch our medically fragile newborns being cared for by the experts. 

Often friends and family don't know how to react, whether to congratulate you on the baby's birth or to look mournful. Even if your baby's health is precarious, it helps to name your baby and announce the birth. 

If you want to breastfeed, you'll need to start expressing by the day after the birth. For many of us, this is the last thing we feel like doing but it is a uniquely precious gift to our babies and is something only we can do. 

Parents often feel too stressed to be explaining the baby's condition to all the people who are concerned. Some parents find it helpful to leave a daily update on their voicemail rather than speaking to a number of people separately. You could also ask a family member or friend to be a contact person on your behalf. 


Some suggestions for helping your baby 

Participate in your baby's care as much as possible. Although your baby may look extremely fragile, you can learn to bath and change her, to care for her skin if it is dry. You can learn how your baby likes to be touched. Through this process, you will come to recognise your baby's facial expressions and signals and become more confident about caring for your preemie. 

Learn about developmental care and do what you can to protect your baby from light and noise. There is a pattern for an isolette (humidicrib) cover in one of the resource sites listed below. If your hospital doesn't provide postural support for the babies, ask if you can bring in your own. 

Ask that your baby be given pain relief or sedation for medical procedures like intubation/extubation and eye exams. Put a courteous sign on your baby's isolette requesting that staff speak gently to your baby before touching him or beginning any medical procedure. 

Begin kangaroo (skin-to-skin) care as soon as your baby is stable. Parents and babies alike find kangaroo care very comforting, and for many of us it is the beginning of feeling that we really are parents, after all. 


Questions to ask your neonatologist 
written by neonatologist and Preemie-L member Dr Doug Derleth 

1. What are my baby's chances for survival, various degrees of handicap, and long-term health problems now? 

2. What medical problems are affecting my baby now? 

3. How can I get more information about my baby's problems? 

4. How are those problems being treated? 

5. What side effects could those treatments have? 

6. Are there reasonable alternative treatments we could consider? 

7. How can I get more involved in my baby's care? 

8. What can I do to best nurture my baby? 

9. How do I find emotional or spiritual support? 

10. Can the newborn ICU's social worker help me with transportation, local housing, financial aid, or other practical problems while my baby is in the newborn ICU? 


A few practical suggestions 

Clarify how you access the neonatologist and how regularly you will be meeting. 

Find out if your NICU provides resources for parents such as books, videos or articles for loan that you can take home. 

If you have other children, find out if any inhouse supports exist, such as creche or toys. 

Decorate your baby's cot with things that are significant to you. 

Take regular photos (without flashlight!) using a constant toy beside your baby so you can measure his progress. 

As your baby grows stronger, take hand and footprints to chart growth and to celebrate every step towards her coming home. 

Sometimes you'll need to take a break from the hospital routine. Resting when you need to will assist your milk supply and help you "last the distance" when your baby has a long NICU stay. 


Some voices from our parents 

"I felt somehow like she got "kicked out" of my body and I still feel ripped off about losing the last ten weeks of my pregnancy. Having to go home without her was the worst day of my life. When I first got her home, I used to hold her and cry and cry because I felt like a bad mother for not carrying her to term." 

"It was difficult for me to believe that it was O.K. for me to take a day off to get much needed rest. A NICU nurse told me, "If you don't get some rest, you can get sick and then you can't come to see your baby." Wow, so much for the 8-12 hour days when you're riding on postpartum guilt for your early bird." 

"What my husband and I ended up doing was creating a tape of us reading stories and singing for the nurses to play to [our son] during those days when I wasn't able to travel to the NICU." 

"One thing that I did, because I am very sensitive to smells, was buy some red bandanas and wash them and sleep with them next to my skin for a night or two. I would take them to the NICU and cover [my son's] eyes with it. I also left a note asking that the bandana be removed every time anyone else had anything to do with him. Whenever the bandana was replaced, [he] would calm down no matter what had happened. 

"I found my babies did better when I read to them. It helped me feel like I was doing something motherly during those times when I couldn't hold them. After I was able to hold them, I still read to them while I held them. [My son] used to love to place his ear on my chest and listen to my voice rumble. All three liked books with an obvious rhythm, like Shel Silverstein and Graeme Base." 

"I know a source that gave me great relief and helped me "keep it together" was seeing photos of the babies who had graduated the NICU ... I would scan the board for all babies close to 29 weeks and gain such relief looking at the "before" and "after" pictures." 

"I don't know how common it is but I got postpartum depression only AFTER I got [my baby] home. I thought when I didn't get depressed during the NICU period that it wasn't going to happen." 

"When [our son] came home, after 119 days in the NICU, we had local children come to visit via the living room window. They were eager to see their celebrity baby (he had been on TV and twice in the papers) so they all came to the front verandah, stared at him through the glass and had drinks and nibbles afterwards. Sounds daft but it met all our needs!" 

Recommended reading 

Newborn Intensive Care: what every parent needs to know by Jeanette Zaichkin, NICU Ink, Petaluma (Ca.), 1996. A detailed and friendly book that covers most medical and other issues parents are likely to experience in the first year. 

Baby talk: for parents who are getting to know their Special Care babies by Dale Hatcher and Kathleen Lehman, Centering Corporation, Omaha (NE), 1989. This book can help you understand your preemie's facial expressions and signals, so that your interaction can be as strong as possible. 

Recommended Web Sites 

When you have a premature baby, you may well feel like a stranger in a strange land. If you'd like to talk to other parents who have been there, Preemie-L is available as an email list and a web based bulletin board. 

So you know someone who's had a premature baby? Advice from Preemie-L members for friends and family of anyone who has had a premature baby. 

Susan Warren's web page Miracle Sam: Very Important Preemie includes guidance on learning to handle your baby without overstimulation, advice on lactation, caring for a central line, and instructions to make a fitted cover for an isolette (humidicrib) which can later be converted to a cot quilt. 

Emotional Responses of Parents by Jane E. Brazy, Ph.D. is part of a invaluable web site For parents of preemies: answers to commonly asked questions 

Michael T. Hynan, Ph.D, author of The psychologial pain of premature parents: a guide to coping, Lanham (Mass.) University Press of America, 1987 has a home page that includes the text of talks given on parent perspectives and a list of academic references. Fathers often find his writing especially relevant to their experience. 

After the NICU: advice for when you finally bring your baby home provides practical advice and insight into the experiences of other parents after their premature babies have been discharged to home.
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