Tag Archive for: preeclampsia

Losing Delilah: Rebuilding a Life for Siblings after the Loss of a Child

Today’s special guest blog by Stacey Porter, President and Founder of The Tangerine Owl Project, puts words around the indescribable event of losing a child and how she rebuilt her life with her family.

It’s the world you never imagined you’d have to live in as a parent. The world where you wake up and your child is no longer with you. I don’t just mean that they’re not a kid anymore or they’ve gone off to college and aren’t living at home anymore. I am talking about the world you’re in when your child has died.

Various sets of circumstances will define how this situation came about for your family; but in the end, losing a childthis group has experienced a flawed reality. It’s one that is unnatural, traumatic, and unfair.  Being left to pick up the pieces after a loss like this is more than difficult, it’s a rebuilding effort like nothing else you’ve ever experienced before.  It’s trying to find a shred of the person you were before you had your heart ripped away. It’s enduring the memories of happier times and wanting to master the art of time travel, so that you could go back and alter your reality, searching mindlessly for clues, wondering where things could have gone wrong. It’s riding the roller coaster of emotions as you wade through the ups, downs, halfways, and zig-zags of your grief…back and forth, over and over again, dizzying and disorienting.  It’s the new lens through which you view yourself, your family, and your life. And that’s just for YOU.

Now, imagine that you also have to tell your living child(ren) that their brother or sister has died. How does one even go about that? To many it sounds like a simple task, “Just tell them the truth”…yes, but nothing is simple. The act of even saying the words is complex, because we are still processing everything ourselves, and saying it out loud makes it real.  You may know and love your children, but you are not them. Not knowing how they will interpret the words, how they will react, and how it will effect them is not so simple at all. Truthfully, nothing can prepare you for that conversation. Since they are a wild card, allowing them the opportunity to express their feelings can go a long way.

I suffered from preeclampsia at 25 weeks gestation with my third child. It was severe enough to cause my hospitalization, where the doctors saw a continued downward trend in my health and decelerations in our baby’s heartbeat. We were faced with the decision to allow the baby to stay in utero as long as possible or to schedule a C-section for that evening. If the baby stayed in utero, they warned that things would likely go very badly, very quickly. If we did the C-section that would give us at least some control over the situation; however, chances of survival were lingering around 40%.  We chose to have the C-section and for 27 days I stayed in the NICU with our little girl.  That was an experience all its own. Then, just when things looked to be heading in the right direction, she caught a very aggressive hospital acquired bacteria. She was not able to fight it off and she became septic.  We got the earth-shattering news that there was nothing left to be done and that we should start making preparations.

Both my husband and I had called our parents and our pastor, asked them to come down, knowing that things were not looking positive.  I honestly don’t remember how our other kids got to the hospital, but I remember very clearly trying to gather up the strength to go out into the waiting room that everyone was gathered in. We had to deliver the news that we were going to turn off the ventilators…. I don’t think I spoke, I wasn’t crying because I had already sobbed enough. Instead I sat speechless and listened as my husband spoke.  I watched as my mom walked away trying to hold back her emotion and my dad followed her, while my husbands parents gave hugs and took in the information.  THEN it was time for the children to hear.  They had been there, but were happily engaged in something else that was diverting their attention and there was nothing I wanted to avoid more than causing them pain.  What would we say?  Would they understand?  How MUCH would they understand?  How do we answer the complicated questions that were bound to come in a way that would make sense to them?  Why was this happening?  Would they blame themselves?  Would they fear hospitals?  A laundry list of other questions continued to race through my head.

At the time our son was 4 ½ and our daughter was 3.  We explained (again) that Delilah was really sick and that the medicine the doctors had given her was not able to help her – she was not going to be able to come home with us. That she was so sick, she was going to die.  Our daughter wasn’t really able to understand such a heavy concept and what that really meant very well, but she saw everyone else she loved in tears and therefore welled up with tears too.  Our son gave the most surprising reaction of all…. I expected that he would kind of grasp the concept, but it affected him much more than I’d imagined.  We sat with him and he took in the words that we had said….and I remember the second it clicked for him, his expression altered from pondering to deep sadness and he began bawling.  He then said the words that haunt my memory when I think about that moment, “But I wanted to play with her and share my toys with her.”  It wasn’t a complaint; it was an astounding realization that this was reality. HIS hopes and dreams for her as his sibling were now completely dashed, and that is when my tears started again.  He asked why the doctors couldn’t make her better – a question that no one had the answer to, other than that they had tried and the bacteria that had made her sick had also made her too weak to fight.  The kids were quiet then as we continued to digest all that was about to happen, and then it was time to go say our goodbyes.

After Delilah died and we returned home, we spent a lot of time on autopilot as parents. My husband and I both did our best to return them to normalcy.  The kids were both in pre-school, so we dropped them off and picked them up, we made sure that their basic needs were met, but we really weren’t capable of much else for about two months following Delilah’s death. We did make sure to let them know they could talk about her any time they wanted and they could ask any questions they wanted.  They saw us grieve in front of them.  We chose not to hide anything from them.

When it comes to children, we often underestimate their understanding of things like this. Our first instinct is to protect them, so our gut reaction is to hide the horrible ugly messes that life throws at us. We want to shield them from the pain, anger, and confusion that we are going through, but if we do that, how will that effect them later?  My personal opinion is that it’s more damaging to “stuff it away” and not discuss at all.  Just as adults need a safe space to discuss traumatic things, kids need the same.  There are parents who will not be able to deal with that discussion right away, and there is nothing wrong with that.  It’s difficult to sort through your own processing, let alone try to communicate with your child about it in a way that is beneficial.  To the parents experiencing this, I would encourage you to find someone who your child trusts and who is ok with talk of sadness/grief to reach out and connect with them, and give them a place to talk when they need to.  Sometimes, this means a professional, but it doesn’t have to be.  Family members and friends can fill this role too.

It has been three years so far since Delilah’s death, and for us it’s been a comfort to know that she is still (and will always be) a part of our family.  We have a few pictures up at home, and the kids asked for one to have in their rooms.  We don’t discuss Delilah on a daily basis, but she’s far from forgotten. Our children still talk about her, and sometimes they ask questions about when she was in the NICU. We talk as honestly as we can about that time with them. They include her sometimes in family pictures that they draw of their own accord, which melts my heart a bit each time it happens. For children, experiencing death is part of living, and even when it is outside the natural order, it’s important to allow them to explore it and to acknowledge that they too have suffered an unimaginable shift in their lives.


Are Premature Babies Delayed?

The term premature refers to any infant that was born earlier than 37 weeks of gestation. Premature births occur in 10% of all live births. Premature babies (“preemies”) are at risk for multiple health problems, including breathing difficulties, cerebral palsy, learning disabilities, and delays in their gross and fine motor skills.

Premature baby

Why are babies born pre-term?

The cause of premature labor is not fully understood. However, there are certain risk factors that can increase the likelihood of premature labor: a woman that has experienced premature labor with a previous birth, a woman that is pregnant with multiples (twins, triplets, etc), and a woman with cervical or uterine defects. Certain health problems can also increase the risk of premature labor, including diabetes, high blood pressure and preeclampsia, obesity, in-vitro fertilization, and a short time period between pregnancies.

What are the effects of being born pre-term?

In addition to multiple medical complications, a baby that is born before 37 weeks of gestation is at risk for developmental problems in gross motor skills, fine motor skills, sensory integration, speech and language skills, and learning. The baby may take longer to reach specific developmental milestones or need help to reach those milestones. The earlier babies are born, the more at risk they are for having delays. Each child is different as well, and no two preemies will be delayed in exactly the same manner.

If you or your pediatrician suspects that your baby is developmentally delayed, there are a variety of professionals that can assist your child in achieving his or her full potential. A physical therapist can help facilitate development of gross motor milestones such as sitting, crawling, walking, running, or jumping. An occupational therapist can help develop fine motor skills such as object manipulation, hand-eye coordination, and reaching, as well as sensory integration. Speech therapists can help improve language skills and articulation.  Consult with your pediatrician or talk with one of our Family Child Advocates to receive more information on setting up an evaluation with a skilled therapist at NSPT.

Love What You Read?  Click Here To Subscribe To Our Blogs Via Email!