Tuesday, August 6, 2013

Are Preemies Worth It?




That is Jack's foot on the left, at about 25 weeks. On the right is our super cute, Mr. Jackpants today. I posted this photo to Facebook and with it, I wrote:

"There's this article making the rounds. It's about the resuscitation of micro preemies. Specifically, about the so-called "worth" of saving these little ones, given the fact that the majority will face life-long medical issues. Every time an article like this comes out, I just wish the naysayers could spend five minutes with our boy. Just a few minutes of their time would be more powerful than anything I could ever write, than any word I could speak. But still, we try. We write. We advocate. Proving the "worth" of my child is almost offensive because this kid, he is a GIFT. So I will keep telling his story."

Here's the thing, friends. I'm getting tired of having to prove Jack's worth for being on this earth.

(Yes, you read that sentence right)

I'm done.

The days of polite pleading, "please try to look at things my way"... yeah, I'm so over that. Because this is my son we are talking about here. Not a hypothetical, pie in the sky, scenario.

There is something seriously wrong with our society when our idea of so-called perfection clouds our vision to the beauty that is right in front of us.

I remember stumbling upon an online forum a year or so ago. Someone had posted a link to Life with Jack, innocently pointing out his story. Below it was the most vitriolic line of comments I had yet seen in regards to my own boy. Hundreds of responses, horrifying to this mama heart I tell you, about how my son shouldn't have been given the chance at life. How we should have pulled support. "But he has so many health problems! He has, like, brain damage and shunts and surgeries. Is it a good idea to keep these kind of babies alive? I don't think that was the right choice."

My eyes were opened to a cruel truth that day. There are people on this earth, that for whatever reason, think kids like Jack should not be alive. Maybe they would phrase it differently. Like the most humane thing to do would be to not let them "suffer". Or maybe they would say the costs of caring for these little "unfortunate" ones outweigh the benefit of their care.  If you think I'm being over-sensitive, you can go read the comments section of the NYT's article or really, any popular post making the rounds about special needs, but it will only prove my point.

I think that any parent facing the likelihood of raising a micropreemie should be educated by a doctor who is not playing God. Someone that will give them the statistics, the numbers, the outcomes. But these parents should also know that the worth of that precious baby is not diminished by their rocky start, their future development delays, their health concerns or the price tag.

Do we really live in a world where we are so afraid of different, so afraid of unique, so afraid of some extra work, that we scare parents away from taking that glorious mirco parenting leap?

If I've learned anything on this blogging journey, if I've taken away anything from my fellow preemie parents, it's this:  we rise to the occasion. 

And we are better for it. We are stronger for it. Our children are not burdens. Let me repeat. They are not burdens in the home or out of the home.

They are gifts. Not to be pitied. Not to be diminished. Their worth is innate. Not given by me. Not given by you.


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28 comments:

Jenn said...

People that don't have preemies dont understand what NICU moms go through. I couldnt get through all the comments of the article. I have a 31 weeker and I know she didnt face all the struggles of micro preemie she is still the toughest kid I have ever met. She has went through more in 13 months than most kids go through in a lifetime (medically speaking)

Jackie said...

No words how perfect this is! Can't thank you enough for always having the right ones :)

NewMom said...

Amen sister!

I don't think I will even read the comments of the article. But I know that no one can truly understand what premature is unless you have dealt with it personally. Each baby is different too, and will have a different outcome. Did you follow the Kermit Gosnell case? (I know unrelated but your post reminded me of it) Horrifying. Totally horrifying.

Alyssa said...

Perfect! You are so good at describing feelings of so many of us. :) I will probably not go and read the comments or the article either, because this stuff just makes me so mad. I think the main problem with this issue is that we can't know what the future holds. Even the doctors can't say for sure what kind of future these babies will have. Some will have mild disabilities, some will have major disabilities, and some may be 100% healthy with no health issues at all. We cannot base our life on the 'what ifs' otherwise no baby would be allowed to live. If you knew your baby was going to get cancer at the age of 6, does that mean you don't want him? If you knew your child was going to have ADHD, do poorly in school, and struggle financially, does that mean you don't want her? We love our children no matter what problems they face, and that is just part of being a parent. Unless a person has been in that exact situation where they are looking at their baby and being asked if they want to continue saving him/her, they shouldn't judge. It's always easy to say what you 'would' do until you actually have to do it.

Jennifer Degl said...

I read that article yesterday and it brought back a lot of emotions. It is very easy for someone to look in from the outside and form opinions. However, when it is your micro preemie in the isolette, it is instinctual to do what ever you can to help them survive, until you have done all that you can. My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called "From Hope To Joy" about my life-threatening pregnancy and my daughter's 4 months in the NICU (with my 3 young sons at home), which is now available on Amazon. It was quite a roller coaster that I am certain some of you have been on or are currently riding on. My goal of writing our memoir is to give a realistic look at what lies ahead to families with preemies in the NICU while showing them that hope can turn into Joy and that miracles can happen. And, one happened to me! Thank you.

Becky P said...

Amen! You said it perfectly!!

Alyssa Kent said...

Like you I was appalled by the comments. Your passionate and eloquent words are the perfect response to those people who have never walked our steps.

In my opinion the op-ed however brings up the issue of prenatal counseling, which is handled very poorly in many hospitals. Something I feel that us in the preemie community should push right along side the prematurity prevention and awareness advocacy.

I was on strict hospital bedrest starting at 21w 4d (and I knew my dates were off by at least 3 days in the bad direction). I think anyone in the preemie community would agree that this is a pre-viable gestation. I personally was not willing to ask the NICU team to intervene at that point. Which then brings the question when were we ready for them to do everything they could do to save my child? Is there a certain date? Is 22w 2d too soon? Would I let my baby declare herself in the delivery room? what does that even mean? Those were by far the darkest and slowest days of my life.

This is exactly where I feel the topic of Dr. Dworetz's op-ed is critical for us to engage. There isn't enough counseling and there isn't the right type of counseling for these situations in OB offices and hospitals right now. We all know what a joy these children are no matter their abilities. We know that we have the strength and power to "rise to the occasion" as you said. But there are women out there right now, next to their husbands facing the scariest hours of their lives that have no idea. They are making decisions the best they know how, but is there a better way to help them work through this time?

Lisa King said...

YES YES YES AND YES! Love this. So well said!

Andrea Combs said...

My micro preemie is the most amazing little girl. She will be 2 on the 19th of this month. I am in tears as I type thjs. CPS stole her from me after her father ( who is a proven drug addict) called saying i was physically abusing her. Never ever could hurt anyone. I HAVE MORE RESPECT FOR MICRO PREEMIE BABIES MORE THAN ANYBODY. THEY FIGHT FOR LIFE WITHOUT A CHOICE. Im fighting so hard to get my bugg back. Ive got all her medical records, her doctors Nd random ppl who have seen her with me backing me up but nobody will listen. Its unfair how ignorant sociery truly iz. After 106days in the NICU terrufied if losing her for an agency to just rip her fro. Me on hearsay without liste ing or investigati g properly us insane. I hurt so bad. I wish somebody would understand. Im so grateful lil Jack made it. These babies are the most wonderful blessings a parent could ever treadure. I want my Nalani home :(

Paper Loon said...

100% yes. My son was born at 24 weeks, 0 days and has since been diagnosed with cerebral palsy, vision problems, and yes "brain damage." He's now two and a half and my life has only changed for the better. We were lucky enough not to have encountered doctors who were playing god in the NICU, but I've heard horror stories of those who have. The decision of whether to keep your tiny child alive is SO personal and SO heartwrenching that no doctor and certainly no jerk commenting on an editorial they read on the internet could possibly understand or empathize with it. Honestly, the fact alone that these strangers think they have some stake in whether my child lives or dies makes my blood boil.

Maikata NaJonathan said...

Her article describes my experience perfectly - with the heel pricks and the bowel perf and the IV lines and all. But we WERE given a consult, and our consult was good. And we chose to have our 23 weeker fight. Best choice we ever made.

She forgot something. By giving us parents the choice, she also gives us HOPE. Hope that our child WILL live, and will be able to feel a breeze and the sun on his face.

This is worth it. Our kids are worth it.

I don't know if you have too (I've only been following you for two months) but I describe our consult here. momofa23weeker.blogspot.com/2013/07/choice.html

I would make the same choice today as I did a year ago -- even with all the heart ache. Heart ache is temporary. Scars fade. He won't remember them. But, thanks to them, he will have a life to remember.

P.S. the comments for THIS oped must have been disabled, I couldn't read any/see any.

Anonymous said...

I am the mom of a 25 week miracle. I read the article and comments earlier. To say i was angry doesn't come close to explaining how i felt. Then the anger turned to sadness. Sadness for those that made the awful comments. There search for perfection will cheat them out of the purest of all loves-- the love of a child. When i chose to fight for my 25 weeker, there was no guarantee that he would be perfectly healthy, But i knew that he would always be perfect in my eyes. There is never a
guarantee for Perfect health for any child born whether
preemie or fullterm. I will now and always continue to fight for my baby.

Jessica Conger said...

I couldn't have said it better! I am a mom to 23 week and 3 day twins. As I type this, I am listening to them snore quietly in our room. We are on our first family beach vacation! My twins are currently 14 months old ( in a few days) and are true miracles. No one thought they had a chance. In fact, everyone thought I was nuts for saying that I knew they were meant to be and I believed they would survive. The hospital they were born in is even writing a story on what a miracle they are. We have faced many ups and downs and that is OUR right, OUR choice, and OUR blessing. Only after having preemie twins do I realize how cruel and judgmental people can be when it comes to an innocent child. I want to know why anyone feels they have the right to judge another human being for wanting their child to live? I am very grateful there are people out there like you who are obviously a blessing to Jack but to the rest of the Preemie moms out there. It is nice to know someone understands and is willing to speak out on these issues. Thank you!

woodra01 said...

When I read the article, I did not understand it to place worth on our micropreemies lives. I understood it to discuss how parents need to be better educated on what the baby is dealing with and outcomes. You know that heartbreak and mourning that happens when you suddenly find yourself a micropreemie mom? I had to endure it a second time when I realized that I was a special needs mom after a couple months home from the NICU.
All any doctor, nurse, and others told me were those Pollyanna "preemies catch up by two stories". I was foolish enough to believe them. I think the discussion of outcomes with parents is over due. I am not saying I would have made any different choices. I love my baby and our lives. It would have helped my husband and myself to have an easier adjustment.

woodra01 said...

PS There are jerks everywhere that think people different from themselves are unworthy of life. I politely excuse myself from their presence. I reserve my energy for loving my sweet baby.

Anita Ramirez said...

JESSI UR ALWAYS RITE ON POINT!!! PEOPLE IN THIS WORLD ARE JUST SO ignorant ThESE DAYS... JACKPANTs IS PERFECT!!!! N AS BEING WORTH OF COURSE MORE THEN ANYTHING IN THIS WORLD I WOULD NEVER CHANGE MY DECISION TO SAVE MY BABY BOY WHO WAS A 26 weekER WITH A GRADE 4 BRAIN BLEED . HeS ONE OF THE STRONGEST BOYS I KNOW! AND A VERY HAPPY HAPPY 1Year old now ;)

Julie said...

I love this. And I love Jackpants. Every hour I spend with him, I am only more amazed at his wise old soul, his fierce determination and his sweet spirit. His mama is pretty great too. :)

Anonymous said...

I wouldn't change a thing about bringing Gwyndalin (born at 24 weeks gestation, 1 lb. 8 oz in weight) into this world! It wasn't easy, it wasn't fun; I didn't have one of those cute countdowns on facebook, I wasn't able to go shopping for all of the cute clothes & baby supplies, and I wasn't able to get out of bed for more than a few minutes at a time to use the restroom. But I wouldn't change it for the world because being a NICU parent has made me the person and Mother that I am today! Knowing that people are questioning the "worth" of micro-preemies is so upsetting but obviously these people haven't had the pleasure of being a NICU parent!

Kristin said...

You are amazing and so is Jack! It is so sad that as a parent you would ever feel like you had to justify fighting for your son's LIFE! Bless you for being such an honest and true voice!

Tatum said...

Fortunately for me, I started working this week and missed all the hubbub until NYT had hid the comments. I'm glad I didn't get to see them. I think at the end of the day people are well intentioned in trying to "avoid pain" but those people don't know the joy that also comes from being the parent of a miracle...whether that miracle lasts minutes, days, weeks, or years. Each moment is cherished and forever appreciated and remembered as joy. Great post Jessi, as always.

NewMom said...

I just wanted to add that not just mirco preemies have that kind of NICU experience. My son at 28 weeks had to experience all of things she describes and I know it was painful. Countless heel pricks,umbilical line, picc line, feeding tube, tube down his throat to make sure there's no air in his belly, ventilater, cpap, cannula, wires to monitor his vitals, tape on his face all the time, tape on his arm. He has scars from his picc line, umbilical line, and from the tape. He has an indent from the feeding tube where his skin formed around it. My son faced less risks (still the list was long) but did endure all the same pain. The only thing we narrowly (very narrowly)avoided was a transfusion. This dr makes it seem like 28 weeks and beyond is no big deal. Its a huge deal. It was worth it.

Anonymous said...

I just found this on pinterest. Thank you! I'm the mother of a micro preemie who didn't make it but everything we went through during her short life was completely worth it. While in the hospital on bedrest the doctors kept asking me if I was sure I wanted them to intervene. I didn't understand, of course I wanted them to do everything possible to save my daughter's life even knowing all the problems she could face. I'm pretty sensitive when it comes to this stuff so I wouldn't put myself through reading the comments. People just could not possibly understand unless they have been through it themselves. A life is a life.

akcrankin said...

I know I am late to the game, but I found this post after I published a similar post through a series of links someone that commented. Your words were spot on and I agree that the comments were the worst part by far. If you have any interest in my post on the subject, here it is: http://fivesticksofbutter.wordpress.com/2013/10/04/you-keep-using-that-word-i-do-not-think-it-means-what-you-think-it-means-inigo-montoya/

Sara said...

Jack is really adorable and beautiful. Will he ever be independent though? That is the big question in my opinion. Will he one day be able to live his life without the need of a caretaker? If the answer is yes then great.If the answer is no then who will look after him once his parents are no longer here? What will happen to him then? Maybe the question does not apply to Jack, what do I know? But it does apply to all the children who need life long care and who cannot grow up to be independent adults.(I am not saying Jack fits in this category.Again,I do not know how much he will catch up with his peers by the end of the development period). What becomes of them once their parents can no longer look after them?

I am sorry if I make any mistakes, English is not my first language.

Sara D said...

I could not believe what I was reading when you said you had to prove your son's worth to people. He look so happy and although he may have a lot of medical problems, he is definitely worth it. However, yesterday, I realized this is more common that I ever would have thought. I have a friend who tried to take her own life. She is now non verbal and has other medical issues. Yesterday, I was talking about her with my friends and teachers (I am a freshmen in high school). One girl then says she wishes that the girl would have succeed in taking her own life because of all of the medical issues she has now. I could not believe she said that. It is very apparent that the girl who tried to take her own life is still happy, even though she has medical issues. It just opened my eyes to how oblivious some people are. And by the way, I love your blog!!

Anonymous said...

Well said. I lost most of my friends because they did not understand and did not stand beside me doing the hardest times. I am a single Mom proud cancer survivor and was given a gift by God my only child. Cancer changed me but nothing like NICU. Unless you have a preemie child you will never understand. Ignore all the uneducated ignorant people. Enjoy every minute with your children. Children are a blessing especially miracle babies.

Anonymous said...

From what I have heard, now that Obamacare is in effect, preemies will not be saved but will be let die. I don't know how true this is.

Susan said...

My twin granddaughters were born at 26 weeks, my daughter was able to give them 2 extra weeks by being in the hospital after going into labor at 24 weeks, The hospital was great about educating my daughter and son-in-law about the possible health issues the babies faced. We knew that one twin was healthier than the other even before their delivery. the decision was made to fight for both babies as long as they were not suffering. They came on day 96 from the NICU, are now 9 months (6 adjusted) and are so loved by our family! Being twins, they were smaller than a singleton, so faced many challenges in the NICU. However, when faced with the choice of continuing to fight for the babies, my daughter and son-in-law always chose to fight. We did not need perfect babies - we loved these babies! So far they are testing at their adjusted age, but whatever the future brings, we will love and cherish them!