Thursday, March 29, 2012

Another mother

There are some positive and hope-inspiring things happening in my life right now, but tonight my heart is heavy, as I have witnessed the pain and grief of another mother joining our forlorn ranks.

It was emotionally difficult for me to hear the details of her unborn baby's condition a short while back, knowing that it would likely not be long until she would joining our unhappy club. She and her doctors took heroic measures to save her sweet baby. Sadly, not enough could be done.

I was so glad to hear that this brave young mother had held her precious son and loved his earthly body, even after he had gone to heaven. She says he was perfect and beautiful. I know that she will eventually cherish the memories of those moments. She gave her baby a name, so that we can all acknowledge his identity and his personhood. This baby has touched many lives, even as he has passed away from us. I hope that she had some comfort from the few thoughts I was able to share with her even as she faced her worst nightmare. I remember being there, in that horrible place, like it was yesterday. Yet at the same time, I am a fundamentally different person than I was when I started on this difficult path.

This beloved baby reminds us that there is no footprint too small.


(Now I Lay Me Down To Sleep - http://www.nowilaymedowntosleep.org/)

Saturday, March 10, 2012

March of Dimes

Earlier this week, I had the privilege of attending the March of Dimes 12th Annual Conference for Health Professionals. The conference was entitled, "Trends and Tribulations: Implications for Perinatal Care." The lectures were on a wide range of topics addressing congenital birth defects, research on the causes of preterm birth and maternal mortality (saving the lives of mothers). I was most interested in a lecture discussing universal newborn screening for congenital heart disease, as well as a lecture regarding research on genetic causes of congenital heart disease. Having been to quite a few conferences, I can say with some authority that this was an excellent educational event sponsored by the March of Dimes.

Why am I sharing this?? While some of you may be interested in my educational / intellectual endeavors, the main reason I mention it is because I want to make you aware of some of the important work that the March of Dimes is involved in. At this conference, there were hundreds of medical professionals (nurses, doctors, midwifes) who, after two days, left with more knowledge about how to save the lives of babies and mothers. There were clinical scientists presenting ground-breaking research on prevention of preterm labor and birth, genetic research and studies addressing the health of pregnant women.

Maybe you didn't know that the March of Dimes provides long term grant support to researchers studying congenital defects. Since 1954, 13 scientist supported by the March of Dimes have received the Nobel Prize. Grants from the March of Dimes have led to many important discoveries, such as the genetic causes for Marfan syndrome and Fragile X syndrome. One of the more interesting speakers at the conference was presenting an update on work being done at the Prematurity Research Center at Stanford University. This state of the art, interdiscipinary center was funded by a $20 million grant from the March of Dimes.

As a mother who has lost her daughter to a severe congenital heart defect, I have the utmost appreciation for the mission of the March of Dimes. I want to live to see the day where we understand the causes of and risk factors for the congenital defects that are affecting our babies. To know how to prevent preterm births and how to better care for our preterm infants. For all babies to be screened for life-threatening conditions that are treatable once identified. For every woman to experience a healthy, full term pregnancy without compromising her own health. I will campaign for the March of Dimes from now until I see my daughter again.


Which leads me to the March for Babies. Last year, only a few months after the loss of our daughter, I learned about the March. This national "walkathon" generates funds to support the mission of the March of Dimes to pursue all of the goals I have detailed above. We founded a team called "For Love of Angeline" in 2011. We became one of the top family teams at our community's walk, and I was the top family walker - all thanks to the very generous support offered by our family, friends and colleagues. In 2012, Team "For Love of Angeline" is off to a great start. We have added several teammates who are actively campaigning as well. Two of my friends who are participating also have children who have been affected by congenital defects and preterm birth. They have been inspired by our efforts to join with us and raise funds for this most important cause.

As I see it, the mission of the March of Dimes should matter to everyone. Have you had a healthy baby? If yes, give because you are thankful. Have you had a baby too early? Give because your child benefited from care in NICU and survived. Have you lost a pregnancy owing to preterm labor or preeclampsia? Give because these are two areas of very active research supported by the March of Dimes. Have you experienced miscarriage, stillbirth or recurrent pregnancy loss? Give because you want to encourage research on genetic diseases and risk factors for miscarriage and late pregnancy loss. Perhaps you don't have a baby yet, but may have one someday. Give because the work of the March of Dimes may one day save your child's life. No one is going to do this for our children if we won't.

I hope I have encouraged you to consider supporting this amazing organization. Maybe you will rise to the challenge of starting a family team in your community or participating in a company team through your employer. If you cannot participate in your area for whatever reason, please consider making a contribution to our team via the March for Babies website (link on sidebar). No gift is too small. We would love to know that Angeline touched you and helped move you to support the fight for babies' lives.

Saturday, February 25, 2012

The inequity of life

There are so many things I have lost, besides my daughter. Try as I do to maintain a positive attitude in the face of irritatingly persistent challenges, I can't help but think of all the things I have lost since December 29th, 2010. My sense of joy in life, for one. When she died, part of me died too. You are robbed when your child dies. The losses are emotional, psychological, physical, financial, social. Just like any other violent assault or trauma, healing is painfully slow. The scars never go away.

I look around me and I see people that otherwise look a lot like me on the outside. Yet for the most part, their lives have not been devastated the way mine has. Probably some of the have troubles, maybe even significant pain. Some of the others basically lead a charmed existence, where things just fall into place for them, without much work or worry or disappointment.

I see the gap widening between myself and others. Their lives seem so foreign to me. What must it be like to have a life without carrying this heavy weight?

The inherent inequity of life: it just is the way it is. It seems that for me, things just cannot come easily, at least not right now. Maybe not ever. It seems very strange to me when people look me in the eye and say, "I just know things will get better for you." I don't know why they would say that. Maybe things will get better, or maybe they won't. Maybe they'll get worse. That's always a possibility.

Of course, I should add the perfunctory remark about being grateful for the blessings and good fortune I have had in life. I most certainly am thankful for the positive aspects of my life. It's just that the most precious, sacred act I have ever attempted ended catastrophically. It's not as if I was trying to broker peace in the Middle East, win the Nobel Prize in Physics or any other unrealistic goal. I was just trying to do what we are all born to do. It didn't seem that unreasonable an expectation.

At this point, I have just come to accept that for some of us the road is harder. I don't know why we have been chosen for this. It's just the way it is.

Wednesday, February 8, 2012

Congenital Heart Disease Awareness Week

This week before Valentine's Day has been designated as Congenital Heart Disease Awareness Week. Our Angeline was lost to a severe congenital heart defect. Like many babies who die from this devastating condition, Angeline's heart defect was not diagnosed prior to her death. Many babies are not diagnosed until they show signs of respiratory distress after delivery. It may be minutes, hours, or days until their condition is apparent. Some babies are actually discharged from the hospital with undiagnosed congenital heart defects, and in some cases, their parents experience the horror of unexpectedly losing their new baby at home. I had read Cora's story a number of months ago. Her mother and others are working to promote a very simple and completely painless newborn screening test: pulse oximetry.



Cora's story: http://www.corasstory.org/

Monday, February 6, 2012

Year of the Water Dragon

The Chinese New Year began on January 23, 2012. This is the "year of the dragon," as you may have heard. According to Chinese tradition, the dragon is an auspicious creature: it symbolizes power, luck, good fortune. Of course, the year of the dragon is a highly desirable time for a child to be born, according to those subscribing to this philosophy.


2011 was a really horrible year in so many ways for so many people. I personally know a number of people for whom it was easily the worst year of their lives, myself included.

I do believe that the tide may finally be turning. I feel in a way that a black cloud is lifting. Maybe it's just my imagination, but I really don't think so.

On the other hand, surviving the first year after the loss of you child is in itself an accomplishment and a relief. There is nothing that can compare to the early raw emotions, the prolonged and enduring sadness, the heaviness of the all of the "firsts" without your baby. Further, I did not have the comfort of the promise of a new life while passing each milestone. We have faced many challenges that would provide material for another blog altogether. And amazingly, I survived anyway.

This year, I have already decided, will be different. Will be... good? Can I actually go so far as to say that? Yes, I still miss my sweet Angeline every minute of every day. I always will, but I have to find happiness, joy, excitement and other good things here in this live without her. I am grateful to be surrounded by living angels here on earth who lift me up, day in and day out. They have convinced me that there are better times ahead.

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