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 support group for parents of older preemies 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. Jacque describes that, "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. She says, "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. 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. For her, "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 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.

Allison Martin, MPA is a web designer and preemie parent. She is the manager of the suppport group Preemie Child, where this conversation took place.