A: I found out I was pregnant at the end of August in 2014. This was my first pregnancy, and I was just shy of my 38th birthday. Due to my “advanced age”, my OB sent me to see a perinatal specialist. From my first appointment, they knew something was wrong.
On the sonogram, they saw a cystic hygroma around her head. The cystic hygroma was a collection of fluid around her head, kind of like a big blister. My husband and I tried to stay hopeful that the hygroma would go away, as we were told in some cases they do. But we were also told this could be a bad sign. It was likely a sign of a chromosome abnormality called Turner syndrome, an abnormality only in females when they are missing one of their X chromosomes. This was confirmed after the genetic testing came back. The doctor explained that some babies can make it full term and are born with Turner syndrome, and can live a long happy, relatively normal life. But others may struggle with physical issues and may have heart defects and infertility as they get older. However, she also made us aware that many Turner pregnancies just don’t make it.
At each visit to the perinatal specialist, the hygroma was larger and finally, we were told she had hydrops (fluid under the inflamed soft tissue) on all limbs. The doctor told us she was “incompatible with life” and that we should discuss inducing my labor because our baby would not make it further than 20 weeks. We were devastated and went home to deal with what we had just been told. We asked for another referral to a different specialist, just to have another opinion before making such a difficult call. At this specialist’s office, we saw 2 doctors with many years of experience. They did yet another sonogram, and we learned her condition was even worse, and they confirmed that they had only seen 1 baby as sick get any better. They also told me that since our baby girl (now named Isabel) was having heart issues, and my body could start mirroring those same issues. They confirmed that she would not survive the pregnancy and the best thing we could do is to induce.
My husband asked the 1 question I wanted to ask, but just couldn’t get out of my mouth, “Does she feel pain?” The hydrops (fluid buildup) was so severe that we could see on the sonogram that she was not able to move much. In fact, I had not been able to feel her moving around at this point in the pregnancy. The doctors told us there was no way to know if she could feel pain, but they have seen babies try to move away from needles during amniocentesis, which could lead you to believe they can. That was all we needed to hear when it came to making the decision to induce her because we did not want Isabel to suffer as we knew there was no chance for her to survive since she had gotten so critically ill in the womb.
We scheduled the induction. I was 18 weeks pregnant. We felt that in this terrible set of circumstances it was the only thing we could do. She was induced on November 16th, 2014 and she did not arrive until 5:22 am on November 17th. She had no heartbeat, but she looked like an angel.
We spent time with her holding her, examining every inch of her precious face before we allowed our family to come to meet our girl. She was just under 11 ounces and had the most beautiful face – one of the very few places on her that were unaffected by the effects of Turner syndrome. It looked like she had my fingers and toes and she had my husband’s nose and lips. We spent several hours with Isabel in the room, until I knew it was time to say goodbye. I spent one more night in the hospital and when I was alone for a couple of hours, I cried as I have never cried before.
It was unbearable, the pain of letting her go. I needed that time to finally let out all that I had been holding in for so long. When it was time to leave and I was sitting there in a wheelchair waiting for my husband to bring the car around to take me home, it really hit me that I had come in as two and was leaving as one. It was a sense of loss that I had not felt before, and I broke down again. We made arrangements to have her cremated so she could come home, but just knowing she was not coming home in a car seat for us to love, was something I was unprepared for. She finally came home a week and a half after we left the hospital, in a tiny urn.
Q: What does your grief look like and how does it differ from the first year to the 4th year?
A: For the first year, I had a hard time not letting losing her take over many of my thoughts. For months we would go back to the hospital where I had her and look at a donation plaque on the wall that was placed in her memory. It was very strange to want to go back there, but I think it made me feel better because it was the only place I was able to hold her and see her. It’s the place I said goodbye.
I did a lot of driving and crying that first year. Particular songs would take me right back to those moments of her loss. I got pregnant again about 6 months after her loss, in May of 2015. In some ways, it helped consume my thoughts, but it also brought a lot of fears back in my mind. I choose to see a different OB, so that helped me have a more positive experience at that time, but that didn’t stop me from tearing up anytime I drove by my old OB’s office. Honestly, I still get a lump in my throat seeing that place. Today, I still have hard days, where little things can make me cry and music has always been one of those for me. I find myself watching my son doing something, like dancing around the house and tear up thinking how I wish she was here to dance with him too. It’s still difficult to go clothes shopping for our son without noticing the cute girl clothes and imagining which clothes Isabel would be wearing. I still grieve her loss every day, I don’t think I will ever get over losing her, but I am just thankful I had her for the time I did.
Q: Infant loss is more profoundly felt by the mother due to her role in the pregnancy. How does your husband’s grief differ from yours?
A: I feel that I have always carried the burden of guilt and regret that my husband has not had to carry being the father. I still think of things I did, and said, during pregnancy and think, did I cause this to happen, or could I have done anything different to change the outcome? My husband has reassured me that I did everything I could to have the healthiest pregnancy possible. My brain knows I did nothing to cause our loss, but my heart sometimes still struggles with it. I am a more open person than my husband, so I think my way of dealing with my grief has always been to talk about Isabel to any, and everyone, that will listen. I let my emotions be known and don’t apologize for the bad days when they happen.
My husband is a much more private person and has kept more of his grief inside, letting only a few people see his hurt. But I know that losing Isabel has also caused him to feel a profound loss and he still struggles with the fact that we don’t have her here with us raising her alongside our son.
Q: Many relationships don’t survive this type of trauma. What steps have you taken to keep your marriage together?
A: In the beginning, we talked about our feelings a lot with each other, which helped us stay connected. He was always there to hug me and comfort me when I would wake up crying missing Isabel. I was there to listen and comfort him when he would open up about how much he was hurting.
Q: Do you still seek support and where do you find it?
A: I have recently started counseling for help with my grief over Isabel. I also lost my father 1 year after Izzie, so I know I need help moving forward and dealing with grief. I also have a few very close friends that are always there to listen and support me on the days where I struggle to keep it together.
Q: How do you take care of yourself while grieving?
A: For me, when I feel like I need to cry, I let myself cry. I know that keeping it bottled inside does not help. I always pick up the phone when it has been a particularly bad day and call my person. I watch a lot of episodes of The Office, or one of my favorite funny movies to get me out of my funk. If all else fails, I eat some sugary foods and get a pedicure.
Q: What types of things do you do to remember your baby?
A: We have been donating gifts for Christmas each year in her memory, always choosing gifts for a girl the same age as Isabel would be. I take the day off on her Birthday and my husband and I usually try to take a short trip out of town or spend the day somewhere relaxing like the Japanese Gardens in Ft. Worth. We have taken part in a walk of remembering with the organization Compassionate Friends. I got a tattoo with her name and footprints on my wrist in her memory. I personally talk about her quite often and share about her on my social media pages.
Q: You’ve had a living birth since, how do you share the memory of Isabel with your young son?
A: My son was born in January 2016, just 14 months after we lost Isabel. We have pictures of us with her from the hospital in the home, her urn, the blankets we held her in, and many other memorial items that he sees every day. He is 4 months away from his 4th birthday, so I think he doesn’t quite understand it all yet but does ask about the items, pictures, and my tattoo from time to time and we tell him she is his sister who is in heaven. He kisses my tattoo and smiles. I want him to know her whole story when he is old enough to understand.
Q: What advice would you give another mother and father having recently suffered a similar loss?
A: I would tell anyone that is going through this very painful experience, to let yourself feel sad, you indeed lost a child. I have heard it said that when you lose a spouse, you’re called a widow, or a widower. If you’re a child and you lose your parents, then you’re an orphan. But there is no word for when a parent loses a child because it’s just too awful to have a name. This is very true and you should never feel bad because you are sad. Take time to take care of yourself, even when you don’t feel like it. Find someone you can open up to about what you are feeling, whether it’s a parent, friend or therapist. Grief counseling and support groups are available. They can help you learn ways to cope with such a tremendous loss.
Thank you Holly for sharing your unique story with us. Grief is a journey and I hope others can be inspired by your path to healing.
