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

Preemie Survivor Guilt

When we talk about the NICU, we can’t share our story without sharing the story of a little boy named Ethan. Ethan was born a day after Kylie and was 11 weeks early, while Kylie was 10 weeks early. I am the type of person that when going through certain experiences, I like to find someone immediately to be able to talk to about it who knows what it’s like to go through the same thing.

Ethan’s parents quickly became our friends as Kylie and Ethan had incubators right next to each other. Our feeding times were close to the same so we always looked forward to seeing them to catch up on our babies’ progress, share some laughs over the silly things they would do, and dream about our babies’ future. We would talk about their first birthday parties and how we should do them together as they were so close in age and were clearly turning into best buds. When Kylie would cry, Ethan would cry and vise versa. It was like they had their own little language and couldn’t wait to get out of the NICU and be home with their parents.

One day we came in to the NICU and Ethan’s dad was there. He said things had taken a bad turn over night but couldn’t really tell me much. I went to see Kylie and knew I’d get the full story that night when we saw them. We came back later that night and saw Ethan full of tubes; he had just had surgery. He had contracted a horrible disease called necrotizing enterocolitis  (NEC). This often-fatal disease attacks and kills the baby’s intestines. Ethan had surgery to remove the diseased bowel and they would know more details within about 17 days as to how bad the damage was.

We were devastated, but were so hopeful that he would be okay. Seven days later, we came into the NICU to find out that Ethan was not going to make it. Our hearts were broken. Seeing his family and his parents that we adored so much go through that is by far one of the most painful experiences of my life. We were so thankful and happy that Kylie was okay, but it was so hard to be grateful and excited about her milestones that day and the coming days when we knew they were in so much pain.

The NICU experience was not hard for us because Kylie did great.  She ‘graduated’ much earlier than expected and was never ‘sick’. Our experience was life changing and very painful because of the things we saw. We loved little Ethan and are still close friends with his parents. We are so grateful to have them in our life and are so blessed to have been the chosen few that got to meet Ethan and get to know him. He will be in our hearts forever.

Dani Curliss About Dani Curliss

Dani Curliss (TX) is the mother of two, Kylie and Austin. Kylie was born 10 weeks early, weighing 2lbs. 10oz., and Austin was born at 37 weeks. Both babies were born early due to preeclampsia. Kylie is now three and has no lasting complications from her prematurity. Dani and her husband have made their life mission to raise awareness of prematurity and preeclampsia and she shared Kylie's NICU journey on her personal blog. She learned a wealth of information during their six-week NICU stay, and finds healing from their experience by helping and encouraging others with their story. You can find Dani on Pinterest, or email her at d.curliss@outlook.com.

Comments

  1. Thank you for sharing your story. We did not make that many friends in the NICU as ours was huge and we had twins (at 29 weeks), so there was always a lot of hustle and bustle. But very early on in our 8 week stay, we did notice one family that was not moving. They were holding their baby as he passed. The fears my husband and I shared throughout our entire pregnancy and NICU stay became real at that moment, and we will never forget it. We already had “infertility problems survivor guilt”, so the “preemie survivor guilt” just got added in. You really realize how precious life is and you appreciate the time you have with your little ones.

    • Dani CurlissDani Curliss says:

      I am sorry you had so much guilt. It is hard to try to make sense of something so awful. I am so happy to hear your little 29 weeker graduated though. They make the ordinary things EXTRAordinary <3

  2. Ours is a slightly different story. Our son was born 17 weeks early and those early weeks following his birth were the hardest time of our lives. A very good friend was well into her pregnancy at that time and it was so hard to see pictures of her pregnant belly. I had a hard time with feelings of jealousy while she was expecting her full term baby. Then tragedy struck. She lost her baby at 37 weeks. I realized quickly what a blessing our little miracle is and thank him regularly for fighting to stay with us. She came recently to meet our little man, who is now 34 weeks, and I know it was incredibly hard for her to do so. Neither of us know why we were chosen to travel these difficult paths and we’ve tried to support each other the best we can. All of this is uncharted territory for sure.

    • Dani CurlissDani Curliss says:

      Oh that is heartbreaking 🙁 I still struggle with jealousy and I have to check myself when I feel upset that they ‘can’t WAIT to have their baby’ when they are 20ish weeks. I have to remember that we are forever changed after NICU life and I don’t wish our knowledge of it on anyone. Thank you for sharing your story, it really does put it into perspective.

  3. We were on the different end. We had twins girls at twenty three weeks and twenty four weeks. Our first little girl passed away a few minutes after birth. Our second little girl was born six days later. We knew we were headed down a long road, but where so thankful to have her. Sixteen days later she passed away. I remember being so jealous of everyone because we did not receive a miracle. However, the friends we made have always stayed our friends, and it means a lot to us that there little boy lived. We do watch him to see where our girls would have been doing. I think this was a great article for everyone to read know matter which end you’re on.

    • Wow, I am so sorry. That is so awful and I am so sorry you had to go through that. I am thankful that you have found joy in watching your friends’ children grow, instead of resentment. I can’t imagine the strength it would take to get to a point of healing like that. Thank you for sharing! It is always so inspirational to me to see people go through such tragedy but be able to come out and still find joy and not let it totally destroy them.

  4. WOW what an special blog. I had a 36 weeker born without fingers on his left hand due to amiotic bands. His little fingers were severed in utero around 21 weeks. I was so sad and depressed the entire pregnancy. I have come to realize what a true miracle he is. Following his birth I had a baby born @ 29 weeks weigh ing only 2lbs 11 oz. She was very sick BUT a fighter aftera long stay in the nicu she came home and is a small little miracle. 4 years later We found out Inwas expecting again. THIS WAS A TOTAL SHOCK? I was 41 and pretty careful because of our last close call. Well this little one joined us 6 weeks early after taking ALL the precautions we could. My body just isnt a safe place for my babies in the end. I am TRUELY grateful and blessed that my babies a he with me. The road has been so hard and we still ahve a ways to go. ( my baby is just a few months old now) but I will cherish every second with my babies because I know how it could have ended with any of my 3 miracles. GOD BLESS all the parents out there dealing with preemies or angles. There ia a specila place in heaven for you all.

    • Dani CurlissDani Curliss says:

      Wow! Congrats on your three little miracles! We had a little boy after Kylie who was 3 weeks early but overall healthy. He is now 17 months old! I don’t know how I would have gotten through another NICU stay let alone TWO more! Thank you for sharing your story, we were chosen to be preemie mommies for a reason. Have you seen “How Preemie Moms are Chosen” by Erma Bombeck? Check it out if not 😉

  5. What a touching story, heartbreaking. As an NICU nurse I see this quite a bit, and as if it isn’t hard enough already to be in the NICU, now you have guilt on top of it….. I try to help parents with some of the crazy emotions by encouraging them to share them, and it looks like your story here helps with that. I hope it’s OK, I linked to your story from my post http://nicucentral.com/jealousy/, because I believe your story will help other parents understand what it’s like to feel guilt when another baby suffers.

    • Dani CurlissDani Curliss says:

      Awesome! I am so glad it can be shared with other families. Thank you for posting it to your blog site! We are all in this together to raise awareness and help each other through this process.

  6. I found this today. Just thinking about our NICU experience and how it changed us too. Our little guy was a 26 weeker and he didn’t just survive, he thrived. He had no issues. No brain bleeds, no NEC, no heart problems…nothing. He was only on forced oxygen for 36 hours. And the guilt….I hear of people’s 28 weekers passing away, or their 32 weekers coming home on oxygen, or their 36 weekers being very, very sick….and the guilt.

Trackbacks

  1. […] The flip side of this jealousy is when you find yourself feeling guilty that your situation is better than another family’s in the NICU – your baby is healthier, coming home sooner, less fussy….Again, it’s natural and it’s ok. There really is no way around the fact that within the NICU there will be more tragic situations and more fortunate, and likely you will be somewhere in the middle. Many families offer their support to fellow NICU families, either offering to drive or help deliver milk for a family who can’t visit often, and often just talking with the other families is incredibly healing. I know, because of health privacy laws, the hospital staff will not share any information about any other babies, but they do not need to prevent families from talking with each other, and fellow NICU families are often one of your best sources of understanding and support. One mother describes this type of situation so well in this touching blog post, Preemie Survivor Guilt. […]

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