The choice.

This post is going to be painful to read. It is so painful to write that I almost cannot bear it. Yet I must write it. I am going to say things out loud that I am having trouble processing. These things sound horrible and will make you cringe, but my journey through this has been based in honesty from the start, and I want to continue to be honest. I know other parents have been in this situation and have the same questions and doubts.

The weight today is incredibly heavy. It is pulling me under. Today, I feel like we killed James. I feel like we euthanized him, if I am being totally honest.

This may shock you to read, but I will explain more fully.

James did well with his trach and G-tube surgery. He was recovering uneventfully. He breathed easier than I’d ever seen him breathe. Then unexpectedly, on Saturday night, he had a severe hypertensive crisis. It took him a long time to respond to medications, but he eventually seemed to stabilize.

Then on Monday morning, he crashed terribly. His oxygen saturation plummeted to zero. His heart rate followed. His ECG was a flatline. He was limp and purple in his father’s arms. I wanted to let him go. I had told him the night before – as he was struggling – that if he needed to go, mommy and daddy would be ok, and he could go.

Jim wasn’t ready when he crashed. And so we manually bagged him. We didn’t do chest compressions or administer epinephrine. And he came back to us.

He was on maximum support for his pulmonary hypertension. And he still had that episode. He was still struggling anytime he woke up, dropping his saturation levels. I asked his grandfather (a retired pediatrician) what he thought, and he said “I think he’s getting tired.” My heart broke at those words, because my father-in-law is a man of few words and an ardent supporter of James. He loves his grandchildren more than the world, and for him to say that to me… it was a knife in my heart.

After much deliberation and discussion with his doctor, nurses, and respiratory therapists, we decided to take him off of support. We assumed that since he was on maximum support, and he still basically died, he was not responding to the medications as he needed to be. His pulmonary  hypertension seemed to be progressively worsening.

His doctor offered a quick echocardiogram to evaluate his pulmonary pressures, but the caveat was that the pressures are dynamic, and if they’d been normal when we checked, it was no guarantee that they’d be normal in an hour. There was no guarantee that he wouldn’t crash again. We opted not to do the echo, and now I wonder why? It was non-invasive. Maybe it would have given us more information.

So, we got medications ready for him – fentanyl and midazolam – to keep him sedated and calm when we turned off his ventilator. Before that happened, despite being heavily drugged, he woke up. He looked at us. He listened to our voices. His color was good, and his saturation and heart rate were fairly stable – although at 100% oxygen and 40ppm of nitric oxide, his saturation was still only low 90s.

I want to believe so, so badly that he was saying goodbye when he woke up and looked at us. But I fear that maybe he was waking up to tell us not to give up on him – that he wasn’t ready to go.

I have so many questions. His first hypertensive crisis – his heart rate went up to 250. His color became gray. His limbs were cool. The second severe crisis, when he died essentially, was very different. His heart rate never climbed. His saturation levels dropped first, and then his heart rate followed. Prior to the episode, he’d received a bolus of midazolam – a sedative.

There are so many questions that I can never answer. Why didn’t we wait? It wasn’t any more invasive for him to just wait. He already had his central line in place. He was sedated and on medications. We could have waited – given him more time.

What if it was the midazolam? What if he had a plug in one of his bronchi? What if the episode wasn’t related to the pulmonary hypertension? What if what if what if what if??

We were so exhausted. I’d been at the hospital for 2 days straight. I wasn’t thinking clearly. I was an emotional wreck. What would our decisions have been if we had been rested and able to think clearly?

At the end, we gave him a large dose of fentanyl IV and pulled his ventilator support. Fentanyl is a potent respiratory depressant. He died soon after. I question what he died from – was it his pulmonary hypertension, his dependence on oxygen and positive pressure, or did we overdose him on fentanyl?

It is agony to wonder if you gave up on your child too soon. It is agony to think for even a moment that you killed your child. It is so hard to remember any of it clearly. The exhaustion had taken its toll, and I cannot really remember my thought process. I do remember talking to his doctor, snippets of conversations with his nurses and respiratory therapist. I remember one of our favorite nurses gripping my hands after he was gone and telling me to never have any regrets, that we did everything for him.

I wish that I could do what she said. Instead, when I think of those last, terrified, gut-wrenching hours, the hand around my heart clenches until I cannot breathe. We always knew that James wouldn’t be with us for our whole lives. We believed that his life’s value wasn’t measured in its quantity but in its quality.  We only wanted the best for him, the happiest, fullest life that he could have.

And I see these trisomy babies on our boards beating the odds every day. They are so much stronger than the medical establishment allows. James was doing so well – gaining weight, growing, interactive, and his heart was stable. I had let myself start to believe that we might have years instead of just months.

The only thing that I don’t question is my motives. I would have cared for him until the day I died, no matter how hard it was. He wasn’t a burden. It was never a burden to be his mother – to be his guardian and advocate. I loved him so very, very much. I love him still.  I have hoped that time will bring clarity, but as time moves on, and the events of the day become hazier, my doubts worsen.

I know that guilt is a normal part of grief, and I hope that one day, I will be free of these feelings. Till then, I ride the waves as they come and hope for peace between them.

(And yes, I am seeking professional help with my grieving, as well as counseling for the girls.)

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23 thoughts on “The choice.

  1. My sister had twins with Noonan’s syndrome. Mattie died at 9 weeks. Willow is now 4. Mattie did much better than anyone expected her to do and we were so hopeful. She was moved briefly into a less critical part of the NICU but had to be moved back bc she was a MRSA carrier. Then they gave both girls something by mouth, according to my sister. I don’t know what it was. She said Mattie was never the same after that. She deteriorated until they took her off support and held her until she died. My sister feels the same way you do. It may have all been a coincidence but she can’t stop connecting it.

    I think that everything you said in your post is how my sister felt and how I felt or WOULD have felt if it had been me. Does that make us wrong? Wrong for not trying harder? Sometimes I think we get pulled along by medical advice when it’s presented in a crisis, especially with the knowledge we have. The truth is we can’t function as a medical professional with our own babies (human OR furry). We won’t ever know whether we made the right or wrong decision for Mattie and James. But I believe that we did the absolute best we could. Something like this can’t be measured by right or wrong — but by our actions from the heart, from the absolute CORE of our being.

    If James had been meant to stay, it wouldn’t have mattered what you did. If he was meant to go, it also wouldn’t have changed the outcome. You did the absolute BEST you could do for him. God knows that, and so does James. Your heart was pure and you had nothing but perfect unconditional love for your child. Please be at peace with this. You are still his mother and your heart is still pure. Write out a statement or prayer on a card and when those thoughts enter your mind, recite it until it’s engraved on your soul. “I LOVE JAMES WITH EVERY FIBER OF MY BEING AND I DID THE ABSOLUTE BEST I COULD FOR HIM WHILE HE WAS HERE.” Don’t let those self doubts cloud your memories of your time with him.

    My heart goes out to you and your family. I know how bad it is, and I ache for you so much! I will be praying every single day that you find some peace. It will come. Love and hugs to you.

    Julie

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  2. My heart breaks for you and all of the pain that you have gone through. I also celebrate all of the joy that James brought to you in his short life. I will never know the pain you are feeling, but I do know the process of grief and of illness.

    As to your question about euthanasia and James. Remember that you did allow him to have a humane death, the real definition. You did not kill him (it is hard to even think the thoughts and have to type the words, but I believe it with all of my heart and mind). But most importantly, you gave him the best life that he could have had.

    I pray that you and your family will find peace and comfort in each other and in the memories (all of them eventually) of James.

    Giant hugs and much love to you and your family.

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  3. Hi, Catherine,
    Ah, brutal honesty! You did well! Those questions needed to be asked, to be vented, to have been gotten off your chest, so to speak. In the eye of the storm, in the middle of it all, there wasn’t an opportunity to see the bigger picture, and that’s why I feel that hindsight can be a two-edged sword. In the thick of it all, you had to rely on trust and instinct, because the exhaustion blocked off the rational & logical parts of your brain during those intense days you spent at the hospital. All the intentions of your health team came from a genuine intention to keep James alive. You had James go & come back several times. Those what if questions can be harsh, but they can also be inviting, drawing you closer in to how delicate and resilient the body really is. James fought strongly💪🏻 every step of the way. Sometimes, we don’t get answers. I can understand your reasoning in your claims, like the euthanization & fetanayl (however it is spelled!). Time and talk will heal your heart in due time. Through all of it, I STILL believe you have a beautiful soul & your words flow with love ❤️, Catherine! May God KEEP ON blessing you & your family during this intensely tender time in your life.

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  4. I am so sorry to hear about James death and my heart goes out to you and to your family. My daughter Heni passed away in October ( age 21 with full t18) and I know your pain and grief. I just want to pass on to you my belief that God knows everyone’s timing. It was Heni’s time to go home and I hope you find comfort in the knowledge that it was James time too. Thinking of you and praying for your peace and comfort at this time x

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  5. Oh sweet mommy – thank you for sharing, once again, such raw and honest emotions. My heart is broken in pieces for you and for all of the “what if’s” that are haunting you. James knew such love and was so fortunate to have you as his advocate. You made all of your choices out of love and respect for your sweet baby boy. No words can make you stop re-living those moments, questioning choices, and wondering about the endless “what if’s”. But I say with all honesty and sincerity that you are a hero to James as you loved him and respected him enough to help him pass with dignity and knowing that he was cherished. I think you made all the right choices and that you are so very brave. I am so very sorry though, that you have to struggle with all of these questions. Sending love to you❤️.

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  6. Dear sweet Mother of little James,

    I cannot answer you from a Mother’s heart, because I was never blessed with children. But what I do want to share with you is my experience in caring for Hospice patients as a CNA. Please, please, believe me when I tell you that just before death, a person has a final surge of life…almost as if they will miraculously be healed and live. But sadly, they pass within the next few hours, or day or two. I believe this last burst of life is for the family to say goodbye, to let the loved ones know that their loved one will be fine on their journey to Heaven. I have seen it happen too many times to write here, but believe me when I say from the bottom of my heart that your little James came back those brief moments to tell you goodbye, to thank you for your love, and most importantly to tell you he appreciates that you gave him permission that it was okay to go. That was the greatest gift a Mother and Father could ever give their child. That gift happens when the pain of losing him is less than the pain of keeping him here to suffer. Modern medicine is such that we can keep loved ones here, sometimes selfishly, by trying everything possible to sustain life, but at what point is it counterproductive, at what time do we realize we are fighting nature.

    I had to enforce a DNR on a beloved elderly woman whom I took care of for many years. She was like a Mother and I was as the child she never had. It was the most difficult thing I ever had to do. But, just before she passed, she opened her eyes, smiled and squeezed my hand. I know she was thanking me for letting her go.

    You are a blessing to James. God chose you and your husband to welcome him, to care for him, and finally, to give him back to God. James is in Heaven, whole, healed and happy. Realize that and let it carry you through life until you are all together again.

    I will pray for your comfort and peace of mind…you made the right decisions.

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  7. We do what we can to live with ourselves, real or imagined actions. Time leaves you plenty of opportunity to try yourself over and over if you so choose. My hope is you come to realize it was never really in your hands in the first place, once you realize that forgiving yourself becomes a moot point. Good luck.

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  8. Oh, mama, the “what ifs,” “but waits” and “if onlys”…. I’m so sorry. I wish I could take it from you. I firmly believe that each child is sent to the family they come to because those parents are uniquely qualified to understand and love that baby. And you did, and you have, and you do. Yes, some pull through, and many, many more don’t. You did everything you could, including consulting others, and loving James. I think you knew, and you gave him the very best of you, the chance to move on and leave his tattered little body, and leave you with an overwhelming hole in your lives. He died in peace and the comfort of your love, not in pain. My heart aches so badly for you. May you struggle through until you find a measure of comfort. Love you.

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  9. Oh Catherine, no matter when the end comes, parents have these “what-ifs” thoughts that haunt them. You have been through a significant trauma, and these are “intrusive thoughts” that are part of the cycle of PTSD symptoms. The other part of the cycle is being numb and disassociated. The cycling back and forth is your psyche trying to fight the reality that no parent wants to accept — that their beloved little one is gone — and that it is permanent and unchanging. “No, no, no!” Our minds rebel — if only this, if the doctor had only that, if I had been more rested, if we had waited — it’s the mind rebelling. Grief is a battle with acceptance. It takes a long time to really, truly, deeply get to full acceptance. And that’s ok, but the torment of the cycles, you can be helped with through the counseling you will be seeking. Do seek out someone experienced with trauma and PTSD. It is a special skill in psychotherapy specialties.

    And comparisons with other children and situations and wishing that might be James is just another way your mind is battling you. The reality is Trisomy 18 is really that bad, and among the children who are currently living doing — none of them have exactly the same genetic makeup as James. Every child’s “extra dosage” of genes on that extra chromosome is a unique mix that we don’t currently have any way to make accurate prognoses from today, in time for James. That is what makes me angry — and motivated. We ALL let James die because we as a society and community don’t know more about the actual genetic pathogenesis of Trisomy 18.

    Consider that in order to not feel so out of control (because emotionally that is terrifying to any of us,) you are imagining you had more control that you did, or ever could. The more “intellectual” we are, the more we put stock in our brain’s ability to analyze and figure out things and problem-solve, the more we can tell ourselves IF ONLY I knew more, had more time to learn more, and THINK better, longer — I could have figured this puzzle out. You could not control how Trisomy 18 made James’ body and organs difficult to function and sustain his life. But he was so much more than that body he inhabited. And I am so grateful that you got to experience that fully. Love will always be more powerful than anything Trisomy 18 can hurt. And your heart’s ability to stay connected to that love is the best antidote to the incessant chatter of our brains and it’s illusions of being in control.

    Promise, it will get better — the chatter and the battle with acceptance will get easier.

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  10. Me and my husband lost our baby she was full t 18 but before she left she put up a fight and made our faith really strong. Before savannah snow could have heart surgery she got a cold and couldn’t fight it but before that they said she wouldn’t make it home she did they said she would never talk we got all her coo’s on video they said she couldn’t see or hear she watched her older brother walk around the house and yelled at me when I was talking to her yes she made it to 4 months but she had life yes it was hard and it still is but I believe if she could have beat the cold she would still be here. Don’t believe everything the doctor tell you pray on it and things will work out every child is different and god has the last word just love your baby take pictures and enjoy life don’t worry about the end like I did I love you my sister in Christ! Be strong

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  11. I’m so sorry that you had to go through this I’m in the same boat as you are just take it one min at a time it will be 3 years this years since my baby passed full t 18 and the doctors are telling me now I might not be able to have more kids savannah snow was me and my husbands first child together and was supposed to be our last. I haven’t even taking her milk out the cabinet it was so hard packing her things away but we did it after a month and put everything in the closet and I still go in there just to smell her I keep saying this can’t be my life I even tried to hurt myself but it took my 21 year old to say mom your not alone think about terall ( my husband) he lost both his parents as a teen and think about your other kids he said I know it’s hard but think about savannah snow she is not in pain no more she don’t have to go through what the doctors said surgery and when she was here I did everything right so we will see each other again. know one can tell you how to grieve but I did it wrong I got help and now I have my good and bad days but know this was not your fault and you are a good mother and you loved him I’m sure give it time. A wise woman that lost her child told me it will never be easy but it will get bearable and she is right. Sending you love and hugs

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  12. From one loss mom to another.. sending many prayers. PTSD is horrible. You did everything you could. Our children know that. That being said, it’s only human to forever analyze everything.. especially when you are coming from a medical background like we are. My daughter’s death was different, but I still analyze it over and over.. as if doing so could lead to a different medical outcome. It does lessen with time, but it will always be there. Seek counseling, do what you need to do to take care of yourself. Grief is a lifelong process. Hugs

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  13. I hope and pray you will find freedom in this verse: Romans 8:1– Therefore, there is now NO Condemnation to them which are in Christ Jesus. I’m a mother who is pregnant with a baby with Body-stalk anomaly, which according to the experts have 99% death rate. Our situation may be different but the grief and the decisions we have to face day by day is similar. And I don’t know any place where I can rest my entire heart, soul and mind except in the arms of the Lord Jesus. Only His words and promises comforts and heals. He came to save us and to condemn us no more. He paid the price at the cross so we can have life and life to the fullest. May His Peace flood your heart.

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  14. Oh, Catherine! Remember? No self-condemnation, no recrimination. ? Well, I’ve been doing it, too! What if I’d advised you a little differently, and you’d have been spared this feeling of guilt? What if James had stayed on the respiratory support and continued on the fentanyl for comfort and the rest of his drugs??? Even though I thought, and still think, that he was wearing out, we would have this nagging self-accusation to face, regardless. Satan is the accuser and he doesn’t take any time off. He is also the father of lies.
    I had prayed to God for a miracle of healing. He said, “No.” Then, I asked if He’d kill me and let James live. He said that I wasn’t qualified. I interpreted that as, “Jesus already did all the dying I require for you all.” Thank you, and Jim, for asking me to participate in James’ funeral. For a reminder of what I said, look up Mark 10:13-16 to see God’s opinion of children: “…for the kingdom of God belongs to such as these” and 2 Samuel 12:14-23 where King David said about his infant son, who died, “I shall go to him, but he will not return to me.” James isn’t destroyed or annihilated, but he does want his mommy and daddy, and sisters, to come to him.
    Granddaddy Ashe

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  15. I, too, had the thought that God should take me and let James live. The day of the funeral you had a book to write messages of what we would want to say to James. I had no idea what I could say that I had not already said, but the words that the Apostle Paul wrote to Timothy came to mind; “I have fought the good fight, I have finished the course…”. It reminded me that James had run the course that was his to run and had finished. I guess I still have some running left to do. His life, though brief, was not cut short; it was completed. When I have completed my course, I will see James again, and we will celebrate together.
    Grandma Jessie

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