The HOPE Group

Bailey Magazzu, a HOPE member, wrote this article for the Fall 2005 New HOPE Newsletter.  Bailey and her husband, J.P. lost two precious children, Christina and John Magazzu.

This is my story, nothing more than that. There is no moral dilemma, no surprise ending.  Just a woman who needs to tell her story. Why? So many women experience the tragedy of losing a baby during pregnancy and can’t talk about it or can’t find someone willing to listen. The pain continues after the loss because family and friends don’t know how to react. Pregnancy loss is such a taboo subject in our society and is easily dismissed.  If you are someone who has had a miscarriage or stillbirth, my story is nothing you have not experienced emotionally. If you are a friend of someone who has lost a baby, please read this and perhaps learn to be a better friend. If you are a member of the medical community, I beg that you read this so that you will always be remembered for the empathetic treatment of your patients and not for your negligence.

I buried my son John, although he won’t be alone. We buried him next to his sister Cristina, who I buried three years earlier. I was 23 weeks pregnant when I went to my doctor’s office because I hadn’t felt John move. He was such an active baby. I didn’t have any answers when I left his office but was not convinced answers would have helped. I was devastated, I lost faith and was depressed. I was left with a postpartum body and nothing to show for it. I had floods of people calling with support in the first few days, then I heard very little from them. I was expected to show up in public with a smile on my face while my heart was breaking. I had been through this before. I lost Cristina three years earlier when I was 20 weeks pregnant. The doctor told us there was only a one percent chance of losing a baby in the second trimester. With these odds, who would’ve thought it could happen twice? Was it because I ate junk food? Did I do too much or too little? Does God really not want me to have more children? I will always have guilt. Guilt that my body had failed again.  Guilt that I put another angel in heaven. Guilt that I was nervous about having three children. Now I will forever have guilt because my five year old son has to understand about the death of his baby brother. He will never have that little brother to teach him how to ride his bike or share his room. My two year old daughter will only have baby dolls to play with instead of her brother. My children are the only reason I wake up and keep going. I felt like a zombie going through every day but I give myself credit for getting up and facing the daily tasks whether I can do them or not. I wonder where I would be if I didn’t have these things to do everyday.

I was ready to deliver at one of the local hospitals with my OB/GYN the morning after we discovered no heartbeat. That night he called and told me that I couldn’t deliver John with him because there could be complications that he was not equipped to handle.  Apparently I had a placental previa (where the placenta covers the cervix) and a vaginal delivery would be impossible because I could hemorrhage. I had to go into Boston for an ultrasound with a specialist to determine exactly where my placenta was lying. I was dying inside. Here I was waking up another day knowing that my baby had died inside of me and putting on my maternity clothes like nothing had happened. I just wanted to get to the hospital to deliver him. Thankfully, the doctor determined my placenta did not completely cover my cervix and I could have a vaginal delivery, which he scheduled for that night. I felt very comfortable at that hospital because it was the same place where I delivered Cristina three years earlier.

I delivered John at 12:32 pm the next day. My husband and I had already met with the social worker before his delivery. We knew every answer to her questions because we were asked the same ones years earlier. Yes, we wanted to hold the baby. Yes, we were going to bury him. And yes, we wanted to call the priest so he could baptize him. It was even the same priest who baptized Cristina. I had nothing to say to the priest. I wanted to ask why God could be so cruel to the same family. Hadn’t we lost enough already?

I will always remember the nurses and doctors who helped me during both deliveries. They were wonderfully sympathetic. They held my hand as my husband and I cried. They helped us make the decision to see and hold our babies. The nurse took pictures of us holding John and of his beautiful hands and feet for the memory box they gave us. They explained everything they were doing. The doctor who helped us through the loss of Cristina found us in the hospital because she saw our name on the labor/delivery list at her remote office. I remember her words as I left her office the first time. She told me to get help. She knew that people did not know how to react to death, especially death of a baby and that I was probably going to be ostracized even by our closest family and friends. She suggested that I go to a support group. I was very thankful for that advice. I started going immediately to deal with Cristina’s death. Those women have helped me throughout the years more than I could ever explain. Little did I know that I would need them again so soon.

People’s reaction to my second loss has been wonderful and also somewhat painful. The cards and phone calls came immediately. Some friends sent food and flowers. After we buried John, everything seemed to stop.  My husband went back to work and I was left tending to everyday activities. There were no more daily phone calls to see how I was or if I needed help. There was this underlying assumption that if I needed help, I would ask for it. There were plenty of calls to see if I needed anything in general terms but no specific requests. I wanted to scream for someone to please come over and hold my hand while I cried or take my children for an ice cream so I could visit my babies’ graves. I couldn’t pick up the phone without crying, how was I expected to call for help? I was paralyzed. I wanted someone to call me and say they were coming over with coffee or make an excuse that they were in the neighborhood. I just didn’t want to be ignored.  After two weeks, I started to bring my son back to preschool, the same school he attended for two years. Those mothers ignored me, looked right at me and looked away; only two offered me condolences. They even ignored me as I stood next to them outside watching our kids play. I felt like screaming, “I’m still here!”.

If I can offer words of advice, it is this. Please, don’t ignore those of us who have lost so much. If you don’t know what to say, at least say how sorry you are for our loss. A miscarriage, a stillborn or any pregnancy loss has the same ending. We were expecting a beautiful baby as a part of our lives and we were left with nothing. We left the hospital without our babies and with a broken heart. Listen to us cry even when you don’t want to. Ignore us when we say we don’t need help. If you called everyday before the loss, keep calling. We need time to grieve and possibly space, but don’t walk away. Physically the pain is so much that we can’t even get out of bed. I, in particular, lost blood; I couldn’t fit into my clothes. I was dizzy and terribly tired. Most of us are eating too much or not at all during our grief.  Don’t ask us what you can do, just do it.  Don’t offer words of mistaken comfort that make us feel worse such as “things happen for a reason” or “these things happen to people who can handle it”. Listen to your mother’s advice of thinking before speaking. Doctors, please call and see how we are doing. Don’t ignore us because we are no longer pregnant. You are the only person who can provide some answers to our unending questions. Let your staff know what we have gone through. Most importantly, provide us with the comfort that you know we need in this uncomfortable situation. Wouldn’t it be wonderful to be remembered for all the help you provided?

Bottom line is that life is difficult.  We will all be struck with some tragedy in our lives whether it happens to us directly or someone close. We need to learn how to communicate with each other openly and show how we can help cope with the pain. We often don’t know how to react to other’s tragedy which ultimately means we sometimes ignore people we care about. Others may feel that they make us, for example, uncomfortable if they discuss our babies.  Most people will never know the pain of taking down a nursery that has never been used, putting away maternity clothes after only wearing them for a short time or experiencing the first anniversary of a baby’s death. The pain of losing a baby is unbearable and at times inconsolable. Those who have suffered the loss don’t know how to deal with their own emotions. It is almost impossible to expect others to understand how we feel. One thing is for certain; we can grow from our pain to help others.

An unknown author who lost her own child once wrote: “And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes. So now, when others hurt around me, I do not run from their pain in order to save myself discomfort.  I see it, mourn it, and join them in theirs.”

I have one friend who calls me every January, the month Cristina died, and offers her sympathy knowing how difficult that month must be for me. She will never know how much that one gesture means to me.

I met with the specialist a few weeks later to review John’s autopsy and my blood reports. He found absolutely nothing. No genetic problems, no viruses, no placental problems, no answers. I had a perfect pregnancy, a perfect baby and no reason as to why he died. It didn’t make any sense. Obviously something went wrong with my body. I lost two babies at the same gestational stage. The ironic part to this was that I left his office with the wrenching decision to my fertility. Do we try again or do we thank our blessings for the two children we have? After all, according to the doctors, there was no “medical” reason as to why I lost these babies. I wish I left the office with a “thank you for coming, but we recommend that you don’t conceive again.” At least the decision would be final. The fact is, if I attempt another pregnancy there is no test or ultrasound available that would determine the baby’s outcome. Ultimately I would be tempting fate. Here I am, less than one percent of this happening twice, do we take that chance again knowing what can happen? I desperately want another baby, but at what cost? The decision affects so many, not just me; these are my babies that I am burying.

I end my story like so many others with uncertainty. I am not at a position in my life to make such a life changing decision as to try pregnancy again or not. I would hate to end my fertility on such tragedy but may not be able to face the pain of another possible loss. I still cry when I see a baby at the park or a pregnant woman when I go to the mall. I can’t laugh yet at my husband’s lousy jokes. I make very little attempt at small talk with family and friends because frankly, I just don’t care right now. I know that it will take me a very long time to grieve over everything I have lost. Nevertheless, I am very thankful for my two wonderful children who make me smile every day. I am blessed with a husband who supports every decision I make even when I can’t handle a family function and listens to my complaints of how I feel abandoned. I have immediate family who console me when I start to cry in public. I returned to my support group and praise every one of those women who listen to my boring daily activities that seem like such obstacles to me and allow me to cry when no one else will listen. I hope someday to regain faith in the God who has helped me through so much in my life but has also taken away so much.

Rindy Huebner, founding member of HOPE, wrote this article for the Fall 2004 New HOPE newsletter.

Happy Birthday Mark and Happy Anniversary HOPE. Unbelievably, it will be twenty five years this November 10, 2004 that our precious son, Mark Edward Huebner, was born still.  A few months later, with the help of Winchester Hospital Social Services, Pam Bureau and I formed the HOPE Group.

A few years before Mark was born, my husband and I tried unsuccessfully to have a baby. Tests for infertility were few, but there seemed to be no reason why I couldn’t conceive. Soon I suffered an ectopic pregnancy and we decided to look into adoption.

Three months later I found I was pregnant again. I had an uneventful and happy pregnancy.  The time flew by but during an ultrasound at 40 weeks, our balloon was burst with the words “no fetal heartbeat”.  I delivered Mark vaginally but never saw him. I will always remember one nurse coming to my room and telling me that I had a perfectly formed, beautiful son. I never saw my baby so I cherish those words. We insisted on a service and the only memory I have of Mark is the small white casket covered with yellow roses.

My doctor said that all the tests were negative so the conclusion was a “cord accident”.  We did decide to stay with the same doctor as he was very supportive.  I knew he would treat any subsequent pregnancy at high risk.  The next two months were a fog.  I barely got out of bed.  I was fortunate to have supportive friends and family but I needed to talk to someone who shared my feelings.  I attended a HOPE Group meeting on the South Shore and realized the need for a group in our area.  So with much help and support our HOPE Group started.  Many people ask me why I still stay with the group. It is an act of love for my son; love I could never physically give Mark.  I hope that the pain of others can be eased through the support of parents who have survived the loss of a baby.

Mark will always be in our hearts. We remember him as the first son, grandson, nephew, and brother in our family.  His sister, our precious Karen Alissa, was born less than a year later.  I attended many meetings during that stressful nine months and my HOPE friends supported me all the way. Although we have our beautiful daughter here, not a day goes by that I don’t remember my son in some way.  I cherish every friend I have met through HOPE.  I wish none of us had to lose a baby to become a member but our bond is strong and forever.  The HOPE Group is one positive ripple in my life that came from Mark’s death.

Whether 25 days or 25 years have passed, the pain remains.  It becomes less intense but the emptiness in your heart remains.  I hope you can find positive ways to fill your “heartache emptiness”.  Our group has helped heal my heart.  As I celebrate Mark’s birthday and HOPE’s anniversary, I think of all our members…too many over the years. I send you hugs, love, and peace.

Jeana Catarino, a HOPE member, wrote the following article.  The follow up article can be found on the Newsletter Page in the Fall 2010 New Hope Newsletter.

My husband, Anthony, and I often ponder the appropriate answer when we’re so often asked “how many children do you have?” We have two children. We have one beautiful angel in heaven, Anthony John (A.J.), and one beautiful angel on earth, Angelina. It continues to be the most difficult question we’re faced with when we’re out enjoying time with our beautiful baby girl. We’re obviously parents as we tote around our 19 month old daughter or push her in the stroller. So often complete strangers feel compelled to ask this question that cuts so deeply to the heart of our wound; something so simple yet so deeply personal. The truth is our first born, A.J., died at 35.6 weeks due to a “cord accident”.  He was absolutely perfect and beautiful in every single way, and we will continue to grieve his death for the rest of our lives as we’re forced to cope with the missing piece of our family puzzle. It’s devastating and heart-wrenching to think about how his promising life was ended so soon, but alas, we must persevere.

In an effort to honor our son and keep his memory alive, we decided to make memory boxes for Emerson Hospital in Concord, MA, where A.J. was born. We feel a deep connection to the nurses and staff at Emerson, one in which we continue to nurture today. On the night of A.J.’s second birthday, this past March 18th, 2010, we began our new tradition…we dropped off the first round of memory boxes which we somberly made with lots of love in the hopes they grow dusty and dirty over many years of not being called to duty.

Shortly after A.J.’s birthday and our visit to Emerson, we were approached by the hospital to be interviewed for a short story for their newsletter. The newsletter was described as an “uplifting” and “positive” way to connect with the Emerson Hospital community by sharing momentous or profound stories of survival, determination, acceptance, etc. The public relations department found our story to be interesting and thought it would be a nice way of sharing how wonderful the nurses were at Emerson, and the loving care we received by their staff, even under our devastating circumstances. They found it to be uplifting that Anthony and I went on to have another baby and delivered her at Emerson Hospital, a true testament to the superb care of their facility and our full faith in the hospital staff. In a world where we don’t get to talk about A.J. very often, naturally, we obliged.

To our dismay, Emerson decided to retract the story from being published in their newsletter as they feared it may “upset the masses”. Needless to say we were (and still remain) extremely disappointed. In the aftermath of our disappointment, withstanding the overwhelming feelings of grief, Anthony and I will ALWAYS share that we have two beautiful babies when asked “How many children do you have?” A.J. would have been 2.5 years old, and our beautiful baby girl, Angelina, is 1.5 years old. There is no shame in this; it infers no fault on behalf of the parents or the medical community. Sometimes babies die and we’re forced to move forward in life; and the best way we know how to move forward is to continue to talk about and include A.J. in our family and our daily decisions and tasks. We will continue to share A.J.’s brief yet profound life with Angelina and she will always know that she has a big brother in heaven. We will continue to tend to his garden in the spring, summer and fall and hang his ornament on the Christmas tree each winter. We will continue to donate memory boxes to Emerson Hospital in his honor. I will continue to share in the HOPE Group, thanks to Rindy and Donna and many of the strong and miraculous women that have come before me. I will continue to contribute to this newsletter to hopefully provide my insight and share my experiences in what lies ahead for parents just starting out on their difficult and tumultuous journey. I will also continue to share A.J.‘s beautiful life with complete strangers who don’t know any better than to ask such personal questions…because my son does exist. I will always be his Mom, he will always be my first born, and I thank God for him every day; and for this I will never feel ashamed.

Julie Richardson, a HOPE member, wrote the following story.  It’s the beginning of our “Personal Stories of HOPE” series.

On February 26th 2006, my life changed forever. I was almost 23 weeks pregnant with a set of twins – a son and a daughter that I conceived after four IUI’s and three IVF’s. I went to the hospital because I was not feeling well and my nightmare began. I was told by the doctor that I had an incompetent cervix and I was ten centimeters dialated. The doctor told me I would have to deliver the twins today and they were too young to survive. Twelve hours later, I gave birth to a beautiful baby girl named Kenley and a very handsome son named Chase.

Minutes after they were born, they were welcomed into heaven. I was devastated and in shock. Three days later, I was at their funeral. I knew that day that my life had changed forever. I would never be the same again. I was so lost. I wanted to be a mom so badly and after years and years of infertility treatments, my dream had vanished.

Three months after their death, I woke up one morning and said to myself “I need a change in my life and I need to find some good out of this terrible loss.” That day, I sat down at my computer and started searching. I came across a job opportunity at an egg donation agency. They were seeking a cycle coordinator for their egg donation program. The requirements were a degree in the human service field and personal experience with infertility and IVF. I knew this was the job for me. It was exactly what I was looking for. I applied for the job and was offered the position a few weeks later.

While working at Tiny Treasures, I did three more IVF’s (seven IVF’s total) and suffered a miscarriage. I finally conceived my beautiful miracle baby girl Brooklynn and she just turned three a few weeks ago. I was eventually offered the position of Senior Director of Egg Donation Services which I gladly accepted and I still hold that title today.

At Tiny Treasures, we help parents conceive through the use of a young woman’s egg. This process can be quite emotional and costly for the parents. I find my personal experiences help to make me great at my job. I am able to empathize with my clients and help them navigate through the egg donation process.

As much as I feel my personal experiences help me to be the best at my job, I also find it comforting and healing to be able to share my story with others on a daily basis. I feel my healing process can be attributed to the fact that I get to speak about Chase and Kenley often. They are certainly part of my everyday life. I also feel that I can be a bit of an inspiration to my clients since my infertility journey ended on a happy note. I am able to offer them hope and to “never give up”!!!

I love my job and could never imagine doing anything else. I have helped over 300 clients by giving them the opportunity to try and become parents. I have counseled them, encouraged them and cried with them. Losing Chase and Kenley was heart wrenching but because of them, I am able to help infertile people achieve their dream of becoming parents.

I would give anything for Chase and Kenley to be on this earth with me and their baby sister Brooklynn but sadly, that was not the plan. I find comfort in knowing that they have made me the person I am today and I feel I am a better person, counselor and mother because of them.