Hand to Hold's Official Blog: Written by Parents for Parents

Should I Save My 23-Weeker?

Alexia Pearce delivered her little boy at 23-weeks and says now, “If I’d known then what I do now, I’d have wanted him to die in my arms.”

Take a moment to read her incredible story of now 3-year old Nathan and his inevitable premature death.  Alexia wishes to raise awareness of the important decisions being made in choosing whether to save the lives of the earliest micro preemies.

http://www.guardian.co.uk/society/2011/mar/20/nathan-born-premature-life-death

Alexia Pearce

Alexia Pearce and her son Nathan, three, who was born premature photographed at their home in Petersfield. Photograph: Katherine Rose for the Observer

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. This really is an interesting and hard question to answer. My Samantha was born at 26 weeks. Before she was born they did an indepth ultrasound (it lasted like and hour and a half) where they looked at everything…things I didn’t even know they could see. They estimated her size to be 12 oz. She had holes and cysts in her stomach and a whole other slew of problems. They told us all the statistics and told us she would would most likely not survive. They even brought us a “death packet” with helpful information like cemetary phone numbers, counseling groups, etc. We prayed about it and decided to have a do no recessitate order placed on her. We tried our hardest to look at her future quality of life. Somehow that DNR order got confused at the time of her birth and she was recessitated anyway. Today, I have a very healthy 4 1/2 year old. You never know what will happen.

    For years I felt bad (and still get twinges of guilt) that I had made the choice to not recessitate. I could have missed the opportunity of having her in my life. I think as parents you make the best choices you can given the information your given and the feelings in your gut. I’m not saying that all babies should be saved regardless of their gestation age, nor do I have all the answers. But I do know it is an incredibly difficult decision. And I think it’s important that we, as parents, are able to make that decision. There’s already so much about a premature birth that we aren’t in control of. Ya know?

  2. The ABC drama Grey’s Anatomy just ran a storyline about a baby being born at 23 weeks. I’m not sure where that’s going yet – but I have a sinking feeling it may be romanticized as Alexia mentions.

    This article brings back so many fears and memories from when I initially went into labor at 23 weeks. Thankfully my boys hung on until 27 – but my heart goes out to all preemie parents.

    Yet, I maintain – no matter the outcome – life’s little preemies are the most powerful people I’ve ever met. Those that successfully with the fight enrich our lives like no one else can, and those that say goodbye too soon watch over us all.

  3. So sad, and such a common reality.. I was blessed with a term baby before our losses and our 25 week preemie… He is still suffering prematurity issues, but there is a huge difference with a 23 weeker to a 25 weeker… I think we all question our decisions no matter what we choose. Love to the family xx

  4. Jenna Gladson says:

    I was very blessed when i had my preemie he was 28 weeks and i got one shot to help develop his lungs…he stayed in the NICU for 68 days which i was very difficult i took a year off with him to make sure he got everything he needed…now he is 8 months old and is thriving like a normal 8 month old should he is 19lbs and had cought up…im not sure what i would do if i was placed with that choice but i am positive i would do a lot of praying and put it in Gods hands because no matter what happens we are not in control it took me most of the 68 days he was there to figure that out!

  5. (((HUGS)))) and sending lots of supportive thoughts your way!

    Famlies do need to realize the odds are against these tiny things BUT there is a G-d and miricles do happen!
    We had 24 weekers (twins) 24weeks to the day! anyhow Thank G-d they are now healthy happy 21month olds, our son had a grade 4 brain bleed and they asked us if we wanted to stop life support we decided not to! and I’m so happy we did, he was dignosed with mild CP a couple of months ago but he’s such a blessing and is doing so so well!!!

    So do some kids not do well yes but some do. I belive fiercly that it is not our call to make its G-d who gives us the challenge its G-d who gives and G-d who takes. I feel like he has chosen me to take care of his very special charges and prey he gives me the strength to do a good job. But I would never judge someone for making a different choice!

    ((HUGS))
    P

  6. I had a scare at 23 weeks with my baby that was later born at 35 weeks, she is a healthy but small little princess, and at first I wanted to jump on my band wagon and then I stepped off and thought about it. Even though I am pro life no matter what, I do have to say after going though my baby’s double stroke, OC, PT, and Speech (and knowing we were blessed she was be as healthy as she was), seeing her hurt and have to do things no child should have to, My heart goes out I think a momma hurts every time their baby hurts and I can see where this mom is coming from, I honestly do not know what I would have done in this situation and I think God knew I wasn’t strong enough too, but my heart goes out and I prayer that some day moms won’t have to make such a choice, that their will be medicine there to insure all baby’s a full healthy life.

  7. My daughter was born at 23weeks she is now 5months old and home with me and her daddy doing well x

  8. torn in two by this question. :-(. My head, as a nurse, with medical experience of the difficulties these babies may suffer in later life says on thing, my heart, as mum of a 30 weeker diagnosed with CP, now 9, showing no evidence of CP, says another.

  9. My daughter was born at 23 weeks 4 days. She is 2 months old today and still in the hospital, but doing very well. There’s more to take into consideration than just gestational age. Some babies have different health issues in place already in addition to being premature. Some babies have to have different and complex treatments in order for them to survive and unfortunately those treatments can cause long term damage. It’s not as cut and dry as it seems. Some babies of the same gestational age end up on very different roads to recovery. It’s too much of a case by case basis to just say “Don’t save 23 weekers”.

  10. I just couldn’t ever do it. No matter what gestational age my baby was born if they could try to save her I’d want them to take all measures possible. No matter what.

    However that’s just me. I can’t understand doing it but I would do my best to support a parent making that decision.

  11. God has a plan for every life brought into this world. Alexia made a decision that may confuse many and however difficult it maybe for her son to live from day to day there is a reason why he is alive today. My son was born at 28 weeks and the 70 days he spent in hospital were the most difficult days of my life. its sad though that he may not live a long life. But just giving him all the love in the world can move mountains.

  12. It is a tough choice to make. You do what you feel is right. To see your child suffer is the worst feeling ever. Not every situation is the same and you can only make a choice as an individual, not using someone else experience to make your final choice.

  13. At 20 weeks, we were told that I may not make it to 24 weeks with my twin boys. We were told of our options, choices and statistics. From that point on, every day, it was on our minds as to what choice would we make if today was the day. It as absolutely heart wrenching. You are left feeling helpless and confused, not to mention the emotional roller coaster. Fortunately, my boys hung on til 27 weeks and they are strong, healthy, beautiful babies. We were lucky and very blessed. Had they arrived between 20-26 weeks, I don’t know what our decision would have been. God bless anyone who has to even think about this.

  14. My daughter born as a 25 weeker is now 2 years old and completely healthy. I would never even hesitate about having the doctors revive any baby. God has a great purpose for all babies no matter what their gestation. Full term children are also born with issues such as cerebral palsy and other issues so we never know. We are all here for a reason and we shouldn’t interfere with that.

  15. This story made me very sad. Her opinion confuses me as I never once felt it was “taboo” to think my son should have died just because his life has been in the hospital and with surgeries. He is such a happy baby and we complete eachother, I cant imagine I would choose differently even knowing he may or may not survive his diagnosis in the end. It took me eight months to make peace with that and reading this shook me… that is just my humble opinion. :*(

  16. I have a former 23 weeker who is now 13 months old with chronic kidney failure (she will need a kidney transplant for one of her 2 failing kidneys by the time shes a teen), chronic lung disease, deafness, hypercalcemia, and a laundry list of other illnesses. My daughter is the happiest baby I have even seen. Never cries, smiles all the time. I have also dealt with premature death when her twin sister passed away at one month old. We had no choice but to have her sister taken off the respirator. So I have seen both sides of premature survival and death. I understand everyone deals with stress differently but I instead of sitting with guilt saying I shouldve have and couldve have I just have to take everything day by day and try to give my daughter the best life possible. I feel like I owe her the best life possible since 23 weekers only have a 17% of survival and she fought so hard to beat all odds……….I truly believe most of the babies who do survive- survive for a reason.

  17. I am the mother of a 26wk’er and a 27wk’er, 2 seperate pregnancies. My 26wk’er, Lilly, has passed on. On her 2nd day of life, I was faced with the decision to remove her from the vent following a sudden and catastrophic brain bleed. She passed on nearly 2 years ago and while my heart aches every day that she is not here with me, deep in my heart I know I made the right decision. My baby was suffering and I needed to make her pain go away, sadly, the only way to stop her pain was to let her join Jesus. There are many factors in her health I will not mention, as there is no need to speak of them, but I understand what this woman is saying, had I have been ‘selfish’ and told the medical staff to do all they could to save her, would I have sentenced my sweet child to a life of pain and suffering?

  18. A very unfortunate story but how do you choose that. How do you know what the eventual outcome will be? We chose to have our 25 weeker resuscitated because I could never choose anything else. If we hadn’t chosen that we wouldn’t have the most amazing little boy by our sides. Whilst I empathise and I believe that it is every parent’s choice to make their own decisions – I personally could never have chosen the path to let him die. I chose to fight and so did my little boy and we couldn’t be happier.

  19. I can understand what she is saying about the happily ever after. I too have a 23 weeker and its rough having another child at home while ur in and out of emergency rooms. I stay strong with my prays!

  20. I actually read this while waiting for my 26 weeker to get a CT scan that will help see if she is able to use a cochlear implant as she has profound hearing loss. I know that my daughter is almost a month gestationally than Alexia’s son, and it is very hard to compare preemies, even born on the same day. This was a gut wrenching article to read for me. I honestly had never ever thought that my daughter should not have been saved. It hit so close to home, since my daughter’s deafness is more than likely a result of her early arrival. But my daughter FOUGHT to be here, and I am blessed and happy to have her in my life.

  21. I must say that every child is different at that gestation. You never know until you are put in that situation. I have a 23 weeker that weighed 14 oz at birth! YES, 14 OZ.! We were given the option as to keep him alive or hold him and let him pass. I choose to keep him here. There was never a doubt in my mind that he wouldn’t be ok. Ok by my standards are a little different than most. My son is now 19 months old and weighs 24 lbs. He is on O2 full time, has pulmonary hypertension, a paralyzed vocal cord, wears glasses and has endured 9 surgeries in all BUT I do not regret my decision at all. He is a miracle and he has defied all odds to be here today. He is starting to pull himself to a standing position…something specialists never thought would be possible. He is here to prove those statistics wrong and I thank God every day for my Miracle.

  22. BTW, my Miracle little boy is a surviving twin. Michael’s twin saved his life as well. I too had a placental abruption, infection in the placenta and uterus from Michael’s twin passing in utero. Michael’s twin forced Michael to come early and I knew he was here for a huge reason!

  23. Mom to 23 Weeker says:

    There is no way I would ever make the decision to not choose life for my child. That is a life and I would never want to imagine my life without my baby. Even if that meant not having the “best” quality of life or a “shorter” life. Despite the pain and struggles and the ups and downs of the nicu..I would have never chosen to not have my baby here. We are still early in this journey, but the Lord has blessed my baby so much now and I am so blessed to have my baby in my life.

  24. I have my first baby Liah-Kamille born at 26 weeks and 6 days, she wieght 1 lbs 5 oz (my eyes never seem a baby that small)…Its was really hard to picture a future but pray every day. when I first saw in the incubator I felt my heart getting bigger and stronger for her, “I needed to breath, to relax to be patience for HER . Well those days are long gone…. my little Liah is 5 months old now 2 motnths adjusted. She weight 10 lbs 6 oz..growing beautfully…she is my life!…I now is going to a journey but I’m ready for it….Love you Liah

  25. Rylan Marie's mom says:

    My baby girl was born at 23+6days gestation. She is still in the NICU, and struggling to ween down from high 02. She wil be 30w tomorrow and had gone through 1 surgery in her tummy because of the hole in her intestine. I believe that if had gone through this much and made it this far, she is here for a reason. She is still fighting everyday to survive so mommy and daddy can hold her one day.

  26. My daughter was born at 26 weeks 0 days. I went into premature labor at 25 weeks 2 days. I was held up side down for 5 days to help keep her in longer. She was born 1 lbs. 11 oz.
    Her birth date was in may 2001. That was ten years ago. If they could help a baby 10 years agothen im sure technology has advanced since then. Today she is a normal 10 year old little girl. You would never know that she was early. She has a couple little scars on her arms and legs from the needles, I just tell her they are angle kisses from her special life!

  27. James Buckner says:

    I’m the proud father of a twenty-three and one-half week preemie, her birth weight was 584 grams, roughly one-pound, four ounces, in September of 1994. She suffered a Grade IV Bleed, PDA (hole in her heart), and her birth records indicate she was a breech birth. Her prognosis of surviving her first 24 hours was around thirty-percent. The doctors also warned us that if she did survive, she would have a very low quality of life, in other words, she may never talk or walk, and she might be confined to a wheelchair. I am thankful to God to say that my little girl is doing just fine and will be graduating ON-TIME with her high school class of 2012. I also thank the NICU at the University of Kentucky Medical Center for the amazing level of care provided to all the children coming through their NICU. They are truly one of the best NICU’s in the entire United States.

  28. AT THE END OF THE DAY ITS NOT REALLY UP TO US TO DECIDE WHO STAYS OR GOES. DOCTORS DON’T HAVE THE LAST WORD, GOD DOES. THERE IS A PURPOSE IN EVERYONE’S LIVES THAT DOES NOT EXCLUDE PREEMIES. COMING FROM THE MOTHER OF A PREEMIE I TELL YOU THERE IS A REASON THEY ARE BORN THAT WAY! THEY ARE THE STRONGEST AND WE LEARN TO APPRECIATE THEM MORE THEY STRUGGLE TO STAY HERE WITH US. WE SHOULD STRUGGLE TO MAKE SURE THERE STRUGGLE IS NOT IN VAIN.

  29. Leslie White says:

    Stop giving this woman false hope in the name of Jesus! At 23 weeks my child Chrissy was born. She is 16, can’t walk, can’ t talk, can’t see, can’t feed herself, use the restroom alone, etc, etc. If that isn’t the life you envision for your child then consider other possibilities instead of watching her suffer for the rest of a “life” that was “given” to her by humans instead of The Lord! Don’t listen to these headstrong right to lifers. They just don’t get it that medical intervention does not equal God’s plan!

  30. My son was born at 23 weeks 0 days in April 2009. He endured 77 days on the vent, a PDA ligation, prolonged hypotension, countless blood transfusions, early stage ROP, an inguinal hernia, and BPD. He got out of the NICU a week after his due date, coming home on oxygen and an apnea monitor, both of which he was on for 4 months at home. He was off all meds after being home 3 weeks and hasn’t required any meds since…he’s been very healthy (of course we’ve been careful with him on doctor’s orders, too, as a precaution). He has mild to moderate sensorineural hearing loss (up from moderate to moderately severe)–it appears to be improving still, somehow. He also suffered two partially paralyzed vocal cords, but has always been able to eat fine. One cord is back to normal and the doctor believes the other will follow. Those two things and the little amount of scarring in his lungs from the vent are really the only things left over from his preemie days, well, other than some body scars. He’s doing very, very well now at 2 1/2…he’s tested in the superior range with his motor skills, cognitive, and social/emotional areas recently, when adjusting age for prematurity. Only his speech is behind. He’s healthy, happy, and loves people and animals…the kind of kid you just want to scoop up and hug. He has an incredible memory–he can already read by sight many words he has seen on his Signing Time videos and knows his colors, letters, and numbers. The NICU follow-up people called him a “star.” It’s very possible to have a good outcome with 23-weekers, as you’ve seen above, too. I think all of them will be touched in some way by their prematurity, at this gestation. It’s pretty much a given. But that doesn’t mean that 23-weekers can’t lead wonderful, fulfilling lives either.

  31. Becca Warner says:

    Such a difficult position to be put in. My boys were born @ 30 weeks so clearly we never had to make such a hard choice. My cousin, though, did. Her twins were born early, with one having spina bifida and water on the brain. He really had no chance to survive, much less thrive but of course they wanted the docs to do everything they could. Given his prognosis, after about a week it became clear how big a battle this little boy was facing. His parents signed a DNR each and every day for six weeks but their little son hung on. It has been a massive uphill battle and one that has no end, but Riley is now 13 and doing a million things the doctors always said he wouldn’t do like breathe on his own, walk, etc. It is a double-edged sword, though because he has had to endure over 30 surgeries in his short life, most of them very invasive incl. brain surgery. He has severe physical and emotional limitations and will truely be dependant on others for his entire life. My cousin clearly LOVES her child and has dedicated her life to him but she has said if she could go back she may have made a different decision in the very beginning. He has suffered, his three brothers have suffered, his parents have suffered. Some times modern medical advancements aren’t the wonderful things we think, forcing us to confront incredibly difficult moral and ethical questions. I feel for anyone in this situation and hope they find the strength they need to make the right choice for them.

  32. Cathy Trainor says:

    My 23 1/2, 1lb 3 oz. preemie daughter spent 108 days on the vent and had her share of all the NICU complications but came home 2 weeks before her due date. That was in 1996. She is our miracle and continues to be at 15. She is happy, healthy and leads a 100% normal teen age life as a freshman in high school. We made the right decision at a very emotional time and were one of the lucky ones.

  33. Nancy Williams says:

    It is so unfair to be faced with such a horrendous decision. I am a new grandmother to preemie triplets and my heart is both over-joyed and breaking for my dear daughter and son-in-law. They have 3 beautiful babies, however the complications of premature birth are unfolding. I pray that all 3 of these babies have healthy and worry-free childhoods. These folks who think that no-matter the consequences; do what ever it takes; well let’s see; do you have the stamina, patience of a saint, guts , and physical strength , not to mention lots of money for therapies, gigantic car seats,special feeding equipment , special bed ,etc. and that doesn’t include the 2 hours of sleep the parents will get nightly-if they’re lucky ? I have lived this life and I know what I’m talking about. My 23 year old son is severely disabled. It is a sweet labor of love to change a baby diaper. What is it called when they age into adults and it’s like “scraping peanut butter off a shag carpet” ? Every day. Every week ? until you die- and then who will help my 6’3″ son clean his poopy bottom ? Any pro-lifer’s want to volunteer for the job ? Oh, and my precious son can’t talk, so he screams; non stop; all day. Some day- not so soon I hope, all the Mother-Teresa s [like I used to be before old age set in] will just plain run out of energy. Then what ? I hope, we will all wake up and stop judging what we do not know.

  34. joshua martinez says:

    I was born 23 weeks and am now an 18 year old fully functional man and i admire each and everyone of you that kept holding on not giving up on your child even when the chances of survival were slim . I thank you all and all mothers around the world for having the strength and love for your child.

  35. This was hard to read because it is a valid point. I didn’t realize the importance of the decision I was making when the doctors relized delivery was iminent for my twins at 22 weeks and 5 days and they asked me the question “do you want us to try?” My immediate response was YES! It wasn’t until much later that I realiezed what that meant. My boys were born weighing 535g each. John passed away after 5 days and William is an energetic 2 year old with a very special guardian angel. I had no idea the road we had ahead of us but William continues to beat the odds, he is severely visually impaired and developmentally delayed but he doesn’t let that slow him down. I know our story is not typical and I still don’t know what the future holds for William. I would not judge any mother for wanting her child to die in her arms wire free but I am thankful every day that I did not make that decision.

  36. My daughter was born at 24 weeks and I saw her struggle and put up a great fight. Everyday I would sit next to her incubator and pray and tell her I was fighting for her but if she couldn’t fight anymore I would understand. I signed a dnr form for my baby because I believed I shouldn’t put her body through more than it was capable just to satisfy my own needs. Everyone is entitled to their own opinions and they are all difficult because you have to look at all aspects of it, pain management, value of life, what the “right” thing to do is…it is a very difficult decisionone I finally left up to my faith. I prayed that Gods will be done. I still feel to this day if i was meant to be blessed. with my daughter surviving, I would have her with me now regardless of what I had chosen.

  37. Erin Cadden says:

    Sometimes as a mother and a father you just know when your baby has had enough. it is not right for a baby to be in a box to survive, it’s hard and sad. holding hope that each minute your baby will make, it. Our dr’s and nurses did everything they could to save our baby, but in the end it was her decision, she had been telling us for weeks, and maybe after we held her that’s all she wanted and what we needed. A day does not go by that i do not miss her, but the one thing i was told, can you wake up tomorrow morning without regret, then you know you made the right decision. But, it was hers and we were able to speak for her, she went peacefully in our arms around the people who love her and was no longer a science experiment. She is now my angel and hope. Because it was the one true decision that i made for her that i knew was right, with out a question, no baby should suffer. And some do survive and make it and it is what keeps me holding on that yes they have more work here to do here and that is so awesome. I would give anything to have my girl in my arms, anything.

  38. It is a hard choice. I am glad we made the choice we did. Our son had a difficult start – six surgeries (NEC, PDA, ROP+, to name a few acronymns) but a year out and already he is starting to be so fantastic that many can’t tell he was a 23 week preemie. But this ain’t for the weak hearted, and there were times where, had things gone just SLIGHTLY differently, we’d have had to say goodbye.

    Parents are the right ones to make the choice for these difficult kiddos.

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