Catherine: I’ve always felt that people who go through IVF should get a free pass with regards to pregnancy complications. We’ve already been through enough to get pregnant and should just get to enjoy the rest of the journey. But I know that sadly it doesn’t always work out that way and I know far too many people who have suffered baby loss following their hard-earned pregnancies. Today, I’m speaking with Julie Richardson-Paige, who is the Senior Director of Egg Donation at Tiny Treasures, LLC. I’ve been fortunate to get to know Julie through RESOLVE New England where we both serve on the Board of Directors. Julie, what would you like to share with us about your journey to parenthood?
Julie: Hmmm, ok, do you have an hour? It was a very tough, challenging and sad journey but I am proud to say I made it :). I got married in 2002 and immediately came off birth control as I wanted to be a mom badly. I was 26. Tried for a bit and became pregnant. Sadly I suffered a blighted ovum. My doctor stated that miscarriage was common so she did not think there was anything to worry about. Tried for another year with no success. My doctor did a work up on me and my husband and found out we had some issues. In 2004 I did my first of four IUI’s which we’re not successful. In September of 2004, I did my first IVF cycle and was sure it was going to work. It did not. I did 2 more cycles which were also unsuccessful. I was devastated so I decided to take a bit of a break. My 4th IVF worked! We were pregnant. At 6 weeks I found out it was twins. I was so thrilled. I felt like I was being doubly blessed for waiting so long. Tragically, I went to the hospital at 23 weeks pregnant with back pain and found out I was 10 centimeters dilated and I had to deliver. I found out I have a condition called incompetent cervix. I had to deliver knowing my babies ( a boy and a girl) were too young to survive. At 4:58 pm on February 26, 2006 I gave birth to my son Chase and at 5:35 pm I gave birth to his sister Kenley. They were both perfect babies but their lungs were not mature and they passed away shortly after they were born. This was by far, the worst day of my life. I remember thinking “but I don’t know if I will ever get pregnant again”. It was a very dark lonely road. After a few months of healing, I tried 2 more IVF cycles with no success. Since my twins were born alive, the insurance company granted me one more final IVF cycle- lucky # 7, or at least I was hoping. Days after the transfer I started feeling different. I knew it had worked. I went in for my blood test and found out I was pregnant. This time with only one baby. I knew I needed to have a cerclage (a stitch in my cervix to prevent me from dilating) . I was so scared to be pregnant again. I went in for a few ultrasounds and things did not look promising. The baby was small with a low heart rate. At 12 weeks I went in for a follow up ultrasound and the baby was gone. I had testing done on the fetus and found out it was a little girl and she had a severe chromosomal abnormality- needless to say, I was at my lowest of low. I had to have a D and C the day before Thanksgiving 2006. I had no more insurance coverage left and any treatment would have to be out of pocket. We decided adoption would be the way we would go. I tried to enjoy the holidays and also start working towards the goal of adoption when I felt that feeling again. Went to the doctors and I was 6 weeks pregnant- the old fashioned way! Every doctor that worked with me was shocked! I had my cerclage placed in March of 2007 and on September 14th 2007, my miracle baby Brooklynn was born 4 weeks early. She is my miracle baby and she certainly saved my life. Shortly after she was born, my husband and I got divorced. Our marriage was very stressful and due to the trauma, we both became different people. 2 years later I met the man of my dreams. He came to the relationship with 2 girls and I had Brooklynn (3 girls together). At the age of 36, we thought about having another baby. This was super scary for both of us and our children and also risky for me as I was now advanced maternal age. In July 2012, I found out I was pregnant. I had a cerclage in September 2012 and Monroe was born a week early on February 21 st 2013. She was born 5 days before my twins 7th anniversary of their birth and death. A double edged sword. Even though my husband and I have so much love to give and would love more children, we have decided this is where our journey ends.
Catherine: In the English language, we have a lot of words to describe people who have lost loved ones—orphan, widow, widower, and so forth. But no word for parents who have lost their kids. In your opinion, what are the right words to use to describe these grieving parents?
Julie: There are none! It is the hardest loss by far. It goes against the way life should go. Children should bury their parents when they are old and have lived a wonderful long life. It’s like a piece of your heart is always missing. I know for me, my family will always feel incomplete.
Catherine: Speaking of words, I think many of us have a good sense of what not to say to a grieving parent. “It was meant to be” and “you can always have another” do nothing to ease the pain. But finding the right words to use can be harder. What are some things your friends said to you, or that you wish your friends had said to you, that comforted you shortly after the loss?
Julie: I think the best thing that has ever been said to me is “I don’t know what to say”. The best thing was just a hug or when someone asked me directly what I needed. It is certainly hard when someone says the wrong thing but I don’t hold it against them. They just don’t get it and how lucky they are that they don’t. I think people often feel like they have to say something and due to their ignorance in child loss, they say something wrong. I have had people say to me ” it was God’s will, be thankful you get to sleep in on the weekends and also, don’t worry, you can have more kids”.
Catherine: I understand you are training to be a bereavement doula. Can you tell us about that?
Julie: A bereavement doula is a support person during delivery when there has been a loss or when a baby will pass shortly after birth. I will help them through the delivery and then help them with what comes next such as holding the baby, taking pictures and also helping them to make final decisions on burials, funerals, etc. To learn more about this amazing program please visit www.stillbirthday.com.
Catherine: So how can the medical folks on the front line—nurses, doctors, and so forth—step in right away to help parents who have just suffered a baby loss?
Julie: Support and empathy are so important. Giving the parents some control over the situation is helpful too. I had a good experience at Beth Israel where I delivered. They encouraged me to hold my babies, name them, take pictures, etc. but I think it is hard to wrap your head around this if you never experienced a loss which is one of the reasons I decided to become a bereavement doula. I want to help people through this difficult process. It makes my babies lives and legacy more meaningful.
Catherine: What about friends and family? What can they do to provide their support?
Julie: Just to be there to love and support. Don’t ever pass judgement. It is helpful to have them help with the daily duties of laundry, cooking, cleaning and helping to care for other children. It is important to listen to their feelings and be as supportive as possible. Talk about the baby and use the babies name as they need that validation at that time. Also, to be a watchful eye to make sure the parents are taking care of themselves and contact their doctor if they seem like they may need some help in this area.
Catherine: I know you are active in the ACDK Hope Foundation. Can you tell us about that?
Julie: Soon after my loss of my twins which was over 8 years ago, I was contacted by an amazing woman named Rindy. She ran the Hope group which is a support group for grieving parents after any type of pregnancy loss or infant death. Rindy was my angel. She saved me. She invited me to join her support group. I was finally at a place where I felt “normal”. A place where I belonged. A place where people understood. The group meets the 2nd Wednesday of the month and in 8 1/2 years, I have missed 2 meetings. While attending this meeting, I met 2 great friends, Christine and Jeana. They also lost babies and us 3 teamed up and started a non profit organization called the ACDK Hope Foundation. A stands for Jeana’s son AJ who was born still, C stands for Chase who is my son and the twin of Kenley, D stands for Dakota who is Christine’s daughter who died from an ecoli infection in utero and K stands for Kenley who is my daughter and the twin of Chase. Our mission is that no parent should leave the hospital empty handed. We provide memory boxes to 5 local hospitals. The memory boxes contain handmade knitted hats and blankets, journals, photo albums, photo frames, books, DVD’s, poems and Christine, Jeana and my contact information along with the information on Rindy’s Hope which was originally the Hope Group. The name changed in 2013 when sadly Rindy passed away so the groups name was changed in her memory.
Catherine: I know time doesn’t heal the wounds, but how has the passage of time changed your perspective on your loss? Do you cope differently now than you did in the beginning?
Julie: Sure, you never forget but the fog does clear. I will always be a mom who lost her babies but it does get easier. I remember thinking that I will never laugh or smile again. The first year is the toughest. A year of firsts (Christmas, Mother’s Day, etc). I feel through therapy and support, I am in a good place in my grief. I still think of them every morning when I wake up, I still look at their pictures every single day but now I am not sad. I now feel so lucky I was to be their mom as they make me be a better mom.
Catherine: So how can siblings—whether older siblings or “rainbow babies”—participate in remembering?
Julie: When I suffered my losses, I had no living children at home. Brooklyn who is now 7, came along about a year and a half after they passed. I became pregnant with her about 11 months after they died. I always say that Brooklynn is my miracle and she helped save me from my grief. When I got pregnant with her, I was forced to take care of myself. Brooklynn has known since day 1 that she has a brother and sister and she talks about them all the time. They are a big part of our life. She loves celebrating their birthday at the cometary and releasing balloons, having cake and ice cream. Just yesterday Brooklynn came home from CCD and said they were at church and they had to write down a family member that has passed on. She stated some people said a grandparent or great grandparent, some people said a pet but she was the only one who said a sibling. She always remembers them in class projects, conversations, etc. She makes me very proud. My daughter Monroe will be 2 in a few months and I cannot wait to tell her all about her brother and sister and for her to join us in their celebrations and traditions. I have friends who had children at home when they suffered their loss. They have stated how tough it is to go home and tell them that the baby will not be coming home. But, by having their children’s love, it does help with the grieving process and forces them to get out of bed everyday as they need to be cared for.
Catherine: What advice can you offer specifically to parents who face loss after a long struggle to become pregnant?
Julie: I remember thinking when I was having twins from my 4th IVF how lucky I was and because I waited so long and tried so hard, I was being blessed times 2. When I lost them I thought, how cruel. I remember thinking ” I don’t know if I can ever get pregnant again”. Some people decide to get pregnant again right away to fill that void and some wait a long time due to fear. There is no right or wrong way. You must do what is best for you and your family. I have friends who went on to build their families with donor egg, surrogacy and adoption after a loss so there are other options to build your family after a loss. I guess the best advise I can give is when you feel ready, make an appointment with your doctor and make a plan- whatever that plan shall be! I feel that takes away a bit of the anxiety and desperation.
Catherine: Thank you so much Julie for sharing your story with us.
