Wednesday, March 3, 2010

Letter to NILMDTS

I wanted to address a letter that was recently sent to NILMDTS and posted on a grieving mother's blog:

'Dear Madame,

I am writing to make a plea on behalf of parents who lose their children in the second trimester, following the loss of my son XXXXX in January of this year. XXXXX’s loss was an unexpected blow and with him died so many hopes and dreams we had for his life. XXXXX was born at 17 weeks and 4 days, and though his body showed the affects of 5 days worth of maceration he was in every way perfect and exquisite.

A dear friend of mine is a photographer and when she asked me what I needed I simply asked her to come to the hospital and take pictures of our son. I knew that her camera and her abilities would leave us with something far better than what my own camera would provide. This has proved to be very true, while the few pictures we took with our point and shoot camera captured my son’s body when he was more fresh from the womb, they are grainy and very poor quality.

I cannot even begin to describe to you what having these pictures has done for me and the gift that I have been given. To have XXXXX’s little life so honored and validated helps me tremendously in my grief. In addition these pictures can be used to help other families as they go through their loss and provide awareness of second trimester fetal development. Being able to pull up these pictures and once again see our son’s face, and his amazing little arms, legs, and feet… My heart hurts for moms, dads, siblings, and grandparents who don’t have pictures that show all the wonderful amazing details of their tiny little ones. And that they were indeed here. If I didn’t have these pictures of XXXXX I’m sure I would doubt he was more than a dream.

After XXXXX was born it was brought to my attention that he and babies like him are not accepted by NILMDTS. I’ve been told that a baby must reach 25 weeks of gestation to be eligible for NILMDTS.

This is a travesty! How is my son’s life… and the lives of others like him… less valuable than that of a baby a few weeks older? Were his hands and feet less precious?! Was he less amazing?! Was he less of a person because he was “only” a second trimester baby?!

I assure you, we mothers and fathers who lose our children in the second trimester grieve just as heavily as those parents who lose older babies. I felt my son move within me. We watched him dance and play on the sonogram. I held his cold little body in my hands, and I kissed his little face. He was perfect, he was ours, and our lives will never again be the same without him here.

Please, please don’t deny other parents the gift I have been given simply because their baby is too young. I beseech you to reconsider this guideline. The life of a 25 week gestation baby is not more valuable than that of a 16 or 17 week gestation baby. They are not loved or missed any more.

XXXXX’s Mommy'


'Dear XXXXX,

Thank you so much for writing, and sharing your thoughts. First, please accept our heartfelt condolences on the loss of your precious son XXXXX.

We did also want to give you a response regarding our 25 week gestational guideline. First and foremost, Now I Lay Me Down to Sleep values ALL of these babies no matter how young or tiny they are. Our heart and mission would be that no family goes un-served, and we are certainly not making a statement about any baby and how precious their life is, or on what that child and their photos may mean to their families.

With that being said, our policy is simply a guideline to start from that our medical community partners helped us to put into place. It is a recommended starting point and we have taken pictures of babies even as young as XXXXX on occasion. If a baby is under 25 weeks gestation then we first consult with the hospital staff to help our photographers determine if they can capture professional images. Next, our volunteer photographers are given the choice on if they will go for a session under 25 weeks based on the nursing staff feedback. As our volunteer photographers are not medical professionals, they are not always equipped for handling these tiniest of babies, and so we do let them decide if they are able to take these sessions or not. We understand that often times a baby who has reached 25 weeks or older may not be able to be photographed either and the nursing staff advise us on babies older than 25 weeks also. Our volunteer photographers are also able to use their own discretion on which of these sessions 25 weeks and above they can take.

All of our photographers are volunteers who do this work in an effort to serve families in need on behalf of Now I Lay Me Down to Sleep, and they have such big hearts especially for grieving families. Our volunteer base is not yet big enough to meet the current needs that come up from day to day, and our hearts are heavy that families will go without our services at times. Our guidelines are put into place in order to help us retain volunteers so that they may continue to serve families in need. These policies have been carefully drafted with the help of hospital staff in the communities we serve, and approved by our Board of Directors which includes parents, photographers, and medical staff.

We're sorry if the policy made you feel that any child younger than 25 weeks is less than worthy of our services, that is truly not the case. Many areas are served by a small group of volunteers who have determined that they are unable to photograph those babies who are not yet 25 weeks gestation, either because it is just too difficult for them, there are not enough volunteers to cover the need, or they feel they cannot provide the quality of images for these very tiny babies.

Both of our co-founders and several of our office staff are mothers/fathers who have experienced a loss and we all know that every child is precious and their memories are treasured. We are glad you were able to have a friend take photographs for you. Please let us know if you have further questions that we can answer for you.


Cheryl Haggard

Jacque Lopez
Interim Executive Director & Business Operations Manager

I, as a bereaved mom, cofounder of NILMDTS, helped put this guideline in place. NILMDTS volunteers were being called out at all hours for younger gestational sessions. Alot of the volunteers, sadly, we never heard from again. Our volunteers are not trained health care professionals. As an area coordinator, I try to get as much information possible from the nursing staff, so we can prepare our photographers for their sessions. We never want our photographers to walk into a parents room unprepared. I think as a bereaved parent, I can appreciate that.

Please note that we take many calls for younger gestational babies, only at the recommendation of medical personnel. If a hospital calls us, and thinks that the family will benefit from our services, EVERY attempt will be made to coordinate a photographer for that family. We all know the benefits of NILMDTS services, and it breaks my heart if a family hears about us, after their loss. NILMDTS is in nearly every hospital in the US. NILMDTS also has a Digital ReTouch Service, so that if a photographer is NOT available for a family, and nursing staff has the capibility to take digital images, those can be sent to us, and a volunteer retouch artist will do the necessary retouch and artwork, again, at no cost. Our true mission is to never have a bereaved parent that is interested in NILMDTS services to go without.

Blessings Everyone,

From the NILMDTS Website, under Family:

Who is eligible for the services of Now I Lay Me Down to Sleep?
The services of Now I Lay Me Down to Sleep are available for all parents experiencing an infant loss, (as early as 25 weeks gestation or at the discretion of medical personnel).


asplashofsunshine said...

Although I have never needed your services, thank you for all you do for families that need you. The world is a better place.

Lori said...

Although my Matthew was perfect nd fully formed at 40w4d, I can completely understand that poor mother's heart being broken at losing her son at 17 weeks and wanting every second of his short life to be honored.
I also know that the NILMDTS volunteers really have wings on their backs in that they go into such heartbreaking situations and do such precious things for parents, so I imagine how much it must hurt to see such innocent and sweet little lives lost when they are that young. Just knowing how compassionate and respectful our photographer was allows me to see the depth of her heart.

I think your response is honorable and compassionate, and I can't ever say enough thank-yous for the existence of such an amazing organization.

However, I'll say it again...Thank You!