Life After NICU

How Young is Too Young? Pushing the Limits of Viability

James and His HatHow young is too young, and who is it that makes that decision? You are the person I want to talk with. You are the person who needs to meet James. Had the NICU team attending James’ delivery known his correct gestational age, they would have done nothing. The NICU team would not have been in the delivery room. My amazing little boy would not be alive because no one would have given him a chance. Just look at him. He is a curious, funny, smart little boy who is full of life. He makes every moment better just by being here. How dare someone say he’s not worth the committment financially or medically because he’ll have too many challenges. Look into his sweet face and tell me 22 weeks 6 days isn’t viable.

I started this post weeks ago. I look at it now and then, but that’s all. It’s a hard topic for me. It’s my soapbox, and the reason I put all this out there for people to see. Maybe someday James’ story, and stories of others like him, will help make a difference in the gestational age at which they attempt life-saving measures. I don’t get into politics or have lots of strong opinions I want to convince people of. I’m pretty easy-going about most things, but this is a topic I feel strongly about. This is something I will stand up and fight for.

I don’t know if you can fully understand until you’re faced with the possibility of something as small as one day meaning the difference between life and death. My understanding isn’t as strong as those who have been on the other side; those who have held their babies as they take their last breath because they were born too soon to even try. Those are the people I tell James’ story for.

This was the first time Dad saw James. He was seven minutes old.

This was the first time Dad saw James. He was seven minutes old.

23 weeks is commonly defined as the earliest gestation at which a baby is viable. Most NICU’s will attempt life saving measures on 23 weekers. Some look at weight instead, and will attempt to save babies over 500 grams. James was neither 23 weeks nor 500 grams. There is no test that James would have passed to make the doctors and nurses attending his delivery think he deserved a chance. His Apgar Scores were terrible, he wasn’t breathing, he didn’t make any sound. An error my doctor made the night I was admitted to the hospital helped to save his life. The NICU team discovered that error as they completed paperwork following James’ birth, but, thankfully, he was already on a ventilator.

One of his neonatologists recently told me about a meeting the doctors have every so often to look at how they are doing as a NICU. They look at their own statistics and percentages of survival at various gestational ages. Of course there is no identifying information presented, but she recognized James’ information right away. He was the only baby under 23 weeks gestation. How many others could have survived if they were given a chance?

The Edmonton Journal recently published an article discussing viability (you can find it here). It generated a lot of discussion in preemie groups on Monday about the limits of viability. The article starts with an amazing story of survival of a baby girl born in Florida at 21 weeks 6 days gestation, weighing just 283 grams. (James weighed 440 grams) She, like James, was saved due to an error. She’s now in kindergarten. Just astounding. The article states that in Canada they are starting to push the limits of viability back to 22 weeks gestation. When will hospitals here do the same?

The odds are stacked against 22 weekers surviving. I understand that. Even 23 weekers have tremendous odds to overcome, but many do just that. When it means a child might live, have the opportunity to be held by their mom and dad, feel love, learn to smile and laugh, experience the amazing gift of life, how do you not give them a chance? How do you say no to this?

James Running

Advertisements

62 thoughts on “How Young is Too Young? Pushing the Limits of Viability

  1. Alison, I am very proud and Thankful of you and your dedication to James and His progress. Your contributions to this site cause tears of Love and Joy to my eyes. Thank you and God bless You and Andrew. POP

  2. Thank you for writing about this – it’s an important topic and one I think of alot. Jax was born at 23 weeks 3 days…4 days earlier and my son wouldn’t be here. That’ a little too close for comfort, as you know all too well!

  3. I’m so proud of you for sharing the amazing story of James, and for taking the emotional risk involved with telling not only the incredible moments of joy you’ve experienced, but also the fear and worries and heartbreak you’ve been through. It’s not easy to bare your soul to the world. You’ve done an exceptional job of telling his story and raising awareness. Please keep writing!!!!

    • Thank you so much for the encouragment. I really appreciate it. You’re right, it isn’t easy, but I feel strongly that it’s a story that needs to be told. He is just amazing and hopefully his story will give someone else hope. If it helps even one person than it’s completely worth it. And, it’s good “therapy” for me. 🙂

  4. alison you are such an amzing mother and woman, I tear up every time I ready you blog, so thankful to call you my friend of twenty-something years now!You and James are such a blessing to so many and Im so super proud, ames I will always be one of your many cheerleaders.. GO JAMES!!!

    • Thank you so much Liz! And we don’t have to figure out how many years…YIKES! I appreciate you so much. I know you have prayed and prayed for my little guy. That means the world to me. Thanks for keeping up with him.

  5. WOW. Truly inspirational. I was told there was very VERY little hope before 25 weeks. I made it to 26w5d. Finn is now 18 months old and very much my miracle. Thank you for caring SO MUCH and sharing your story. James is precious. So blessed.

    • Thank you. And, wow, 26w5d is still SO early and so scary. Glad to see he’s 18 months now. Hope he’s doing well. All these little ones are just amazing!

  6. Amazing story. My boy was born at 27.5 weeks and weighed 538 grams (1lb 3oz) He turned 10 today. I can’t imagine my life without him. I am so glad the NICU team didn’t know your boy’s true gestational age before birth and he is here with you!

    • Thank you. I am incredibly thankful too, and couldn’t imagine life without him. To have your son at 27 weeks 10 years ago is just amazing. So glad he’s here with you!

  7. Amazing story. My boy was born at 27.5 weeks and weighed 538 grams (1lb 3oz) He turned 10 today. I can’t imagine my life without him. I am so glad the NICU team didn’t know your boy’s true gestational age before birth and he is here with you!

  8. Simply amazing. I’ve had three preemies myself, (27,31,36 weekers). The technology that they have in NICUs in this day and age is simply wonderful. It’s BEYOND astonishing to see how small your little one is and to see pictures of him as a child and thriving. Keep spreading the word, and advocating, you and your sweet son can make a difference for a lot of babies and parents who aren’t given the chance to make it in the world. 🙂

  9. This hits so close to home for me, especially as I’m coming up on 3 years (May 6), that I delivered my son Easton James at 23 wks 2days weighing 1lb 2oz. Up until minutes from his birth he had a perfect, strong heart rate. But when born lifeless they did nothing to intervene, no resuscitation..nothing. “He’s just not viable” is all they would say. I had lost a baby girl at 21weeks, 2 years prior to this (both due to premature ruptures). So I was absolutely devastated. Truthfully, I didn’t know any better, and never questioned the Doctors. January of 2012 I found out I was pregnant again and immediately was terrified! I was determined that this pregnancy would have a different outcome. I went to completely different doctors, a high risk ob 2 hrs away. It was only then that I learned that it was a hospital’s discretion to determine viability prior to 24 weeks. I was literally sick to my stomach. Once again I ruptured prematurely at 24weeks…I was given magnesium and a steroid shot and transferred out of that hospital immediately. The hospital I was transferred to (where my high risk ob was out of) didn’t even flinch. I made it 4 weeks on hospital bed rest and delivered my amazing sweet Owen at 28 wks. It was during our 3 months in the NICU that I saw other 23 week miracles, and on top of the flood of emotions that comes with the NICU roller coaster, I couldn’t help but think “what if”. I thank you for your story, and James is just too cute for words! Our miracle Owen will be turning 1 year old May 8!

    • I’m so sorry for the loss of your baby girl and the loss of Easton. Your story brings me to tears, and is exactly why I want to keep telling anyone who will listen about James. I can’t imagine the pain and struggle of the NICU with all the “what ifs” on top of it. You are one strong mom to get through that. As hard as it probably is, I hope you don’t feel any guilt. You did what any one of us would’ve done, you trusted that your doctors were giving you all the information. I’m so glad you have Owen! And I hope you have a wonderful celebration as he turns 1 year old. Happy Birthday Owen!!

  10. Thank you for sharing your story. I unfortunately am on the other end of the story. I am one the NICU refused to touch my little boy. According to my calculations I was 24 weeks 2 days, but the hospital did the ultrasound and said I was only 23 1/2 weeks, when my son was born they refused to help him. He was 1lb 8oz and breathed on his own for 45 minutes in my arms. THey said because he wasn’t 24 weeks he wasn’t viable. My question is the same, who’s right is it to decide? If my eldery parent were on life support it would be the family’s decision on whether or not to end support, so why is it not the parents decision? I after all am his mother.

    • Correction: he was 23 weeks 2 days by my calculations but Dr’s said 22 weeks 5 days based on ultrasound.

    • I am so sorry, that is absolutely heartbreaking. I can’t imagine how painful that is for you. It truly hurts my heart to think about babies like your son who aren’t given a chance. Thank you for sharing his story. It takes a lot of courage to do that. You have the opportunity to be his voice now. My hope is that as we all share our what’s in our hearts we can heal a little, and maybe make a difference in the life of another little one. My thoughts are with you.

  11. I was admitted to our regional hospital with an incompetent cervix at 23 weeks. We were told our twins were going to arrive and nothing would be done to try and save them. I wouldn’t be accepted by a hospital in the city with a nicu until 24 weeks. I lay in our local hospital for 10 days before they flew me to a hospital that was able to deal with the arrival of extremely premature babies. By some stroke of luck I stayed pregnant for a lot longer, but it was a horrible time in those first 10 days waiting and hoping I wouldn’t go into labour and knowing if I did nothing was going to be done for our little babies. I am so glad of the administrative error that have your little boy a chance, and what a little fighter James must be!

    • I can’t imagine the fear and worry you must have felt as you tried to stay pregnant long enough for them to give your babies a chance. Two families we met in the NICU were in similiar situations and it was incredibly stressful for them. So glad you were able to keep them “baking” longer!

  12. Thanks for sharing your amazing story.God bless you and your amazing ( and so cute ) son.

    Theo’s mom. 25 Weeks, 920 gr.
    From Quebec, canada.

  13. My twins were 1.2 (18 oz) 510 grams and the other 2.12lbs . I never had to fight the Dr. to keep her alive but was told 8 years ago how grave the chances were. I am glad you got to have your son. Every life is important.

  14. My twin boys were born at 32 weeks. But because one of them was IUGR the doctor talked about termination him at 22 weeks and I said no. Now my boys are 1 month and 1 week old and one of them are at the house and my other son is coming home in 3 days

    • Wow, so thankful you said no. Unfortunately doctors don’t always know best. Your boys are lucky to have such a strong Daddy to fight for them. Congratulations on having one home and the other coming home in 3 days, how wonderful!

  15. In my country (Japan), legal viability is 22w0d. I was already on hospital bed rest for preterm labour at 20w2d. I’m sure you can imagine the sigh of relief when I made it to 22w since I knew that my son had a legal right to be resuscitated. In the end, my son was born 23w6d, and today is a healthy 18 month old Little Emperor.
    Ironically, in my husband’s country (Holland), under no circumstance is a baby revived unless they hit 24w0d. Being one day short of the legal viability mark, my son would have only received comfort care if he was born there. As with your story, it really makes one think about true viability of a baby – especially in what is known as the “grey area”. Granted, more babies at the grey zone viability do not make it, or come home with moderate to severe disabilities that would rob them of quality of life, but there are others , like our children, who have a chance at life thanks to modern medicine.
    When is a child truly viable?

    • Wow, I’m sure you were so relieved to make it to 22 weeks. James’ neonatologist told me about Japan and how they save 22 weekers. At the time they were the only country that did, but I believe Canada is starting to also. You’re right, there are a lot who don’t make it, and a lot with severe disabilities, but when I look at my son I think they at least deserve a chance. Congratulations on your amazing 18 month old! I bet he’s keeping you busy!

  16. Thankyou for sharing your little boys story. I know how hard it is.
    I had a little boy born at 23+3 who was born sleeping. We had already been told that no help would be give to him after birth.
    I then had another boy born at 24+4. With this pregnancy problems started at 23 weeks and nicu agreed to help if he was born this early. He held on until 24 weeks. He wasn’t born breathing but they managed to ventilate him. He lived in nicu for just over 4 months before there was nothing else they could do for him, and he died in my arms.
    I then fell pregnant again. Would I ask for this baby to be saved at 23/24 weeks if not breathing??? I can honestly say I don’t know. The surgeries, pain and suffering I feel my second little boy went through in his short life I still feel guilty for.
    Fortunately I made it to 31 weeks and my daughter is now a healthy 3 year old.
    I try and see this argument from all angles and I still struggle to find a position I feel 100% ok with.
    It’s a difficult but extremely important topic.

    • I am so sorry for the loss of your two sons. I can’t imagine the pain of losing one child, let alone two. My heart goes out to you.
      Thank you so much for sharing your story and adding your perspective to the converstaion. I completely respect your point of view. If you, or anyone else, decided not to have life saving measure attempted on a 22, 23, or 24 week baby I would completely understand. I do think it should be a family decision and not a hospital one though. At the hospital my son was born at they always do life saving measure at 25 weeks and up. At 23 and 24 weeks it is the family’s decision. I hope some day they will consider 22 weekers as well.
      Again, thank you for sharing. I know it isn’t easy. I really appreciate your perspective. And congratulations on your 3 year old, I’m sure she keeps you busy!

  17. This is amazing. My daughter was born at 30 weeks being the earliest my hospital had seen for a while. They were great with her but I take my hats off to you, must of been a long long long long long tough road, I thought 8 weeks was enough. I full agree with you,here in the uk you can abort at 24 weeks, disgusting bating in mind I know mums who’s had their baby born at 24 weeks. My daughter is now almost 19 and has full health , very well fit child full of life. X

    • I think any amount of time in the NICU is harder than anyone can imagine. Whether it’s a few days, weeks, or months, it is full of fear and worry, and probably one of the toughest things you will go through. Eight weeks IS long!
      I had no idea you could abort at 24 weeks in the UK. Wow, that makes me ill.
      So glad your daughter has done well and is healthy. Can’t ask for more than that!

  18. Oops let me retype that a bit. She spent 8 weeks in nicu. She’s almost 19 months .. She’s a bit delayed in development but not by much. She started walking 3/4 weeks ago. It’s amazing what little fighters these babies are x

  19. My son being born at 28wks weighing 1050gms 14 yrs ago, was and still is the hardest thing I have had to go through. I could not imagine getting through a lower gestation, my heart goes out to all the mums dealing with it. Thank you for your story Alison. I never cried back when my boy was born but every time I hear a story now i get tears.

    • 28 weeks 14 years ago, wow. I know that must have been so hard for you. What a strong mom you are. I’m with you, everytime I hear someone else’s story it brings tears. We know what they’re up against and what a hard fight they have ahead. Thank you for sharing about your son.

  20. My Twin girls here born at 23 weeks here in Australia, which usually has a cut off of 24 weeks but is quite flexible.
    My girls turned 2 a week ago, as I type they’re arguing over who gets the prime position on the couch!

    I find that there are so many different views on this subject and I myself was so very torn in deciding whether it was best to medically intervene or not, your faces with an overload of information and articles read and then statuses which make you rethink everything.
    But we’re so lucky to be able to look into our children’s eyes every day, to hear them laugh and watch them experience life.
    They are Fighters, they are true Miracles.

    Thank you for sharing your story xx

    • Makes me smile to hear that your 23 weekers are arguing, how well they must be doing! I agree, there are so many points of view and valid arguments on each side. I definitely have a skewed point of view because of the amazing outcome we had. I’m so thankful we were in the right place at the right time and my little guy is here with me. And so glad for the flexiblity in Australia that allowed your little miracles to be with you. Amazing little fighters they are!

  21. Alison, I am a neonatal intensive care nurse with 35 years of experience. The answer to this question from the parents point of view is actually different than from the health professional point of view. That may sound funny but there are different factors that are weighed differently.
    From a parent point of view, it is very emotionally driven. Love for your baby and an understanding of what you personally can handle emotionally and financially regardless of the outcome of your preterm baby’s course drive you decisions-often in that order.
    Our duty as healthcare professionals is to be much more objective. We must look at the data from all cases and outcomes and make rational decisions based on the resources available to us. It is our duty to practice by professional standards and to provide this information to parents truthfully. Currently, in the United States 23-24 weeks is our standard. There are many other factors that affect a baby’s chances of survival besides age and weight.
    For an idea of how a 22 weeker would do we look at 23 and 24 weekers and know that almost all 22 weekers would not do as well. If the chance for survival is 10-20% at a later age. And the outcome is that 20% have moderate to severe impairment then we must be honest and say this is greater with a 22 weeker. Although there are miracles out there they are the exception.
    Parents don’t love their children less if they have severe brain damage, or can’t breath off a ventilator, will never walk or in some cases talk normally. There are very few families who have any idea what they are getting into if they have a child like this. Marriages often do not survive the strain, families go bankrupt trying to care for their child and other children in the family have to make tremendous adjustments. Finally, there is the quality of life of the child. Living life in pain and discomfort, with uncomfortable and painful procedures is a big burden for them and the longer it goes on the more we have asked of them. I have cried the hardest for babies who have died after a long difficult course because of what they went through before they died.
    As you can see, this is a very complex set of decisions. In the US we have a national NICU database that many NICU’s participate in called the Vermont Oxford Network. We put all our information together and look for ways to provide better care and achieve better outcomes for our babies. I am so glad your situation gave you a beautiful miracle baby and a life time of happiness! When I began NICU nursing so many years ago babies born below 28 weeks had the survival and outcomes we now have at 24 weeks!

    • Thank you so much for sharing your point of view. I absolutely respect the complexity of the issue, and I know I have a skewed point of view because we’ve had such an amazing outcome with our little guy. Our fight for him was most definitely driven out of emotion and love. We didn’t think we would be able to have children, and after 6 1/2 years, out of the blue, I became pregnant. We sat at his bedside everyday for 12 or more hours a day, trying to find ways for him to know how loved he was. It was the hardest time we’ve ever experienced, yet it was filled with so many amazing moments that I am grateful for.
      We had an awesome team of doctors and nurses caring for our baby boy. He was in the right place at the right time. Had another team of doctors at the same nicu been caring for our son I’m not sure they would’ve done everything this particular team did. There is one team that I’m certain wouldn’t have, and that’s really hard to accept.
      I agree with you that there are many other factors to consider besides gestational age and weight, but those are the factors commonly used. I don’t know of any test James would’ve passed that would make a doctor think he had a chance, but look at him now. And not to say it’s all easy. I completely respect what you said about how hard it is. It is completely life changing. He has significant delays, he’s been very sick at times, intubated for 15 days at 2 1/2 years old, I’ve had to quit a job I loved so I can stay home with him, but every bit of struggle we’ve gone through is worth it. He is the happiest, most amazing little boy, and I would do every second of it again for him.
      I don’t know the answer, but I feel very compelled to share his story, so that’s what I do.
      I really appreciate your point of view, and thank you again for sharing it here. You have such an important job. I’m sure it must be filled with incredible joy and incredible heartache. We treasure our NICU nurses. You all are just amazing!!

  22. I was fortunate that my identical twin boys were born at exactly 29weeks due to twin to twin transfusion which showed up at the 27wk scan.It was a bumpy road for us but we were home 4 days before their due date.They are almost 5 now and apart from a slight weight/height difference between them you would never know they were that early.I used to be a ICU nurse which in some ways was a lot harder for me.My sister lost her identical twin girls at 22 weeks which just breaks my heart so much.Thank you for sharing your story.

    • Thanks for sharing about your boys. Twin to twin transfusion is pretty scary. I’m so glad they did well. Home before their due date, that’s fantastic! I’m so sorry for your sister’s loss. That has to be so hard for you too. Just heartbreaking.
      I’m can imagine that having been an ICU nurse makes it incredibly difficult to go through a nicu stay. You know so much more than the average person does about all the risks and things that can go wrong.
      I’m so glad your boys are doing well. I’m sure they’re keeping you so busy!!

  23. Thank you for sharing your story. My water ruptured at 21 weeks 6 days and I was put on medical bed rest. I went into active labor 2 weeks later and was told by the day nurse that if I didn’t hold out until midnight they would place the baby in my arms until he passed away. That she would not even contact the NICU team if he came before. Luckily her sift ended at 6pm and I was blessed with an angel sent from heaven that was willing to fight for my little guy. Needless to say I held on and delivered my precious baby boy at 3:09 am. Ryker weighed in at 1 lb 4.8 oz which we were thankful for because weight was another factor regarding his viability. We were truly blessed and continue to see God’s blessings daily. Thank you again.

    • Those hours leading up to midnight must have been incredibly hard for you. So thankful you had a wonderful nurse to fight for your precious baby boy. Sounds like you have an amazing fighter in Ryker. Thank you for sharing a little of him with us.

  24. Ola, eu sou mãe de um menino de nome “Virgilio”, que nasceu de 23 semanas, com 487 gramas e em casa, foi um choque muito grande, pois não sabia o que fazer, ele era tão pequenino e eu estava sozinha com minha filha que tinha 8 anos. Hoje ele esta bem, muito malandreco, cheio de energia,…graças a Deus. Dou-lhe os meus parabéns e desejo-lhe as maiores felicidades, pois são autênticos milagres!!! Beijinhos

    • I had to translate this online. This is what it came up with:

      Hello, I am a mother of a boy named “Virgilio”, who was born 23 weeks, with 487 grams and at home, it was quite a shock, not knowing what to do, he was so small and I was alone with my daughter who was 8 years old. Today he is well, very malandreco, full of energy, … thank God. I give you my congratulations and wish you all the best as they are authentic miracles! kisses

      Wow, I can’t imagine how scared you must have been to deliver him so early, at home, and all alone! Just amazing. Virgilio must be one special little guy to make it through all of that! I’m so glad he’s doing well now, what a blessing. Thank you so much for telling us about him. I know he will give others hope. What a little miracle he is!

      Espero que isso se traduz corretamente!

      Uau, eu não posso imaginar o quão assustado você deve ter sido para livrá-lo tão cedo, em casa, e sozinha! Simplesmente fantástico. Virgilio deve ser um carinha especial para fazê-lo através de tudo isso! Estou tão feliz que ele está indo bem agora, o que é uma bênção. Muito obrigado por nos dizer sobre ele. Eu sei que ele vai dar aos outros a esperança. O que é um pequeno milagre que ele é!

  25. Amazing! Your son is beautiful! After having our daughter in the NICU for 108 days, I have seen and witnessed the struggles these babies go through and you have a miracle. There are some things that medical research cannot justify or explain, that is when you know that God has intervened! Prayers to you and your precious family.

    • Thank you Jen. I appreciate your kind words. You definitely see a lot of struggle and pain during a NICU journey. It is heartbreaking at times. I know that James has a purpose and he is definitely meant to be here. Several times during my pregnancy we thought we lost him, and then everything he endured in the NICU – when the neonatologist calls him a miracle it hits home pretty hard.

  26. Pingback: Quality of Life and Viability, the Debate Continues | 22w6d

Thanks for stopping by. I love hearing from you...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s