Fetal Demise Interview

A week or two ago I was contacted by a nursing student at WSU doing a research paper on fetal demise. She was looking to gather information about different experiences so she, and other nursing students, would know what and what not to do. She was very sweet, and I can tell she will do great things as being a nurse. She truly cares, and I think we can all agree that the world needs more people in the medical field that care the way she does.

I have sat on two parent panels and am doing another one on the 31st. A parent panel is like a question and answer board that sits in on a training for nurses and physicians so they may have a better understanding of your experiance and what can be done differently in the future. Because of a panel I did at a nurses training, KMC has changed their policy on how they handle infants/babies who have passed. When Mitchell and I arrived at the funeral home, we were shocked to see our beautiful Aiden wrapped in a chuck (essentially a medical paper towel) while Wyatt lay next to him bundled in a onsie and two blankets. KMC now ensures me their practice is to bundle the baby with a blanket, and even clothed if possible, when being transported through the hospital, lab and funeral home. Aiden did have a blanket, however they thought it would be better to give the blanket to us than robe his little naked body with it. Anyways...I'm doing what I can to help the next parent that has to live their worst nightmare. And this is a start...

Here is the interview: (its a long one!)

Where did you receive maternal care?
My prenatal care was with the Henneberg office in Coeur d’Alene and I delivered Aiden, Twin A, at Kootenai Medical Center, and Wyatt, Twin B, at Sacred Heart in Spokane, WA.

Can you walk us through the experience? What do you remember about your feelings surrounding this experience?
I am 25 and married to my high school sweetheart of almost 9 years. We have been married for 2, and last spring decided we were ready to experience the blessing of having children. We got pregnant right away and just a few short weeks later, discovered we were having twins, and eventually found out the sex – boys! We were elated, to say the least. I had a perfect pregnancy, read every book, ate all the right things, did everything I possibly could and everything went great, until it didn’t.

Through all my reading and research about pregnancy I was relieved to find myself five months pregnant with no signs of premature labor, miscarriage, etc and had read after 16 weeks, you are basically ‘in the clear.’ At 22 ½ weeks I had a couple days of intense pressure and cramping which my doctor explained was just round ligament pain and my uterus stretching. The cramping didn’t go away and I woke at 2:20am to a terrible cramp and my water breaking.

Apparently, they weren’t cramps, they were contractions. By the time I made it to KMC, I was fully dilated and delivery of Aiden was eminent. Aiden’s labor was intense because it was so sudden and then prolonged. There was no hurry to deliver him as Wyatt’s membrane was still in tacked, and rushing Aiden may have compromised Wyatt- there was a glimmer of hope for him. Aiden was alive and well when we arrived at the hospital, but was stillborn at 9:19am Monday, August 26th, bruised and banged up due to the hard labor. Immediately after delivering my Angel Aiden, the decision of going to Sacred Heart was our next focus to try and save Wyatt. We waited to MedStar to arrive to transport me and only spent a very quick and harsh couple of hours with Aiden before I was transported.

Upon being admitted to Sacred Heart, I was bombarded with questions, tests and prayers – lots of prayers. Wyatt was still hanging in there, fighting hard like always. His membrane had not ruptured and my contractions we fading. We kept monitors on him at all times and came to the decision of an amniocentesis to check for chromosomal abnormalities and infection to help rule out possibilities of why this was happening. If there were no abnormalities or infection they would perform a cerclage to give Wyatt a couple more days, or weeks, for the best chance of survival. Sacred Heart would not perform life saving measures on any baby younger than 24 weeks, 23 weeks if the parents insist. We had previously decided with doctors that we didn’t want Wyatt’s life to be spent hooked up to monitors and tubes, but rather in our loving arms without struggle or pain, if he were delivered before 26 weeks. The mortality rate of infants born at 23 weeks is 80%, 24 weeks, 70%, and 26 weeks, 50% (or something around there) and we just couldn’t see ourselves making our son fight that hard for his life…or what little of it he had.

The amnio sent me into intense contractions and excruciating pain. After 34+ hours and a couple days at home of cramping all without any pain medication, I could not handle any more. I was given something to ease the pain, but it wasn’t enough. I wanted to be numb. The docs ordered an epidural and while the epidural was being performed, my water broke. I delivered Wyatt five minutes later at 5:24pm on Tuesday, August 27th.

We were absolutely heart broken. I had never felt pain like that, and by pain I mean emotional, not physically. Giving birth is nothing compared to what my heart was feeling. My husband was crushed and our families were disappointed and confused. Everything was so prefect, and it was such a blessing to finally have something good happen to our family who has and is still dealing with terminal illnesses, cancer and the like. Almost every member of my parent’s immediate family has been fighting something in the last 3 years, so the birth of twin boys was something everyone was really looking forward to. On top of our own personal heartbreak of our children dying, we also had the huge feeling of disappointment from our family and friends. We were all so looking forward to it as you could imagine.

Luckily, our families and friends are amazing. We had such overwhelming support from our entire community. I have never seen anything like it. My house was covered floor to ceiling in bouquets, and at the boys’ funeral, at least five pews of my Catholic church were filled with uniformed firefighters. It was breathtaking.

My amniocentesis came back perfect. Nothing was ever shown to have caused my premature labor. No infection, no chromosomal abnormality, no placental abruption, nothing. I am left with no answers or any indication if this will happen again.

How did it impact your partnership with your spouse?
Luckily, I am married to a great guy. He has stood by me, helped me, cradled me, took care of me, grieved with me. He has been a rock, but the kind of rock that cries with you and understands that I needed him more than ever. We are closer now that I think we ever could have been if this hadn’t happened.

How did it impact your relationship with your other children?
Fortunately, and unfortunately, we have no other children.

Was this experience your first with childbirth, or had you already had children?
This was the first.

How many children do you have now?
0 children, 2 Angels.

Has this experience affected your decision to have more children?
Yes, it has. To start, I only ever wanted two children, now I want dozens! (Not that my husband would let that happen J) We are trying to conceive again, but I am terrified of being pregnant again and having this happen again.

Can you tell us about how your other children were impacted by this experience?
See above…

When did you first learn of your child’s death?
Aiden was stillborn, and Wyatt was alive for about 5 minutes before he passed. They were too young to survive.

What community services/resources did you use to deal with issues/concerns related to being a member of this population?
I have branched out in a couple different ways. I attend the MISS Foundation’s support group meetings in Spokane as well as being a member of the Parental Advisory Council that was just formed by Heather Roberts of Providence Sacred Heart (and my nurse) along with a few other bereaved parents. I am also involved with the Sharing to Care support group at KMC and have spoken at a parent panel for the nurses at KMC. I am also trying to get certain features of the Forget-Me-Not program into KMC so parents can have the closure we experienced at Sacred Heart. I love to be involved, and the more I can share my experience and listen to other parents experiences, the more healed I feel.

How was your experience at the hospital? What made it better/worse?
KMC was your basic small town hospital. My doctor was great, he stayed with us through everything at KMC, including cancelling a days worth of personal obligations. Our first shift of nurses we fantastic! They were considerate, caring and compassionate. They cried with us, talked to us, prayed for us. Second shift was not so, but luckily we weren’t there too long. One of these nurses wrote up Aiden’s birth information like you would a living child, to document the weight and height, etc for the parents, but did a horrible and rushed job scribbling things out and even using a form dated 2002. So I have a document that says I had a stillborn six year old. They just didn’t get it. At KMC, there isn’t a lot of training on infant death, as the cases are usually shifted somewhere else, like Sacred Heart.

Sacred Heat was fantastic. The nurses were great, and I can’t say enough about Heather Roberts and the Forget-Me-Not program. She gave us something so sacred, and the ability to find closure. She came in the night Wyatt was born and helped us bathe him, do his measurements, dress him and best of all, hold him. He slept all wrapped up on my chest all night and that is something I will always cherish. I have anxiety and regret that I was not able to do this with Aiden.

At KMC, Aiden was not given any clothing, just a blanket that they sent home with me. When we arrived at the funeral home, he was just wrapped in a chuck. I was mortified. KMC has since changed their procedures to always swaddle babies – dead or alive! So luckily, no parent will ever have to see their beautiful baby wrapped in a paper towel.

What about after you were home? How did the community respond?
I mentioned this before, but our community was great. Everywhere we went and everything we did had nothing but caring and compassionate people. Like I mentioned, everyone was so excited about the boys, and I don’t mean just the family. My husband comes from a fourth generation Coeur d’Alene native family, so everyone knows us! The support we received was overwhelming and more than we could ever have imagined. I would not be able to speak so openly about our experience if we hadn’t had the support we did.

Did you have support outside your family—from friends? From the medical community? From your church? Work? Anywhere else?
Yes, yes and yes. In fact, my gynecologist’s elder brother who practices in the same office, came and sat in the waiting room with our families at KMC, and also followed up with a phone call a few days later. At Sacred Heart, I saw Dr. Statt, who I found out was just an interim doctor, so follow-up was difficult because he was the only one who really understood the situation and by the time I was ready to go back and talk with him about the what-ifs and the future, he was gone.

Father Bill Crowley from our Church came to KMC and stayed with us through everything and also baptized Aiden after he was born.

Are the services/resources available adequate to meet your needs? If not adequate what suggestions do you have for improvement?
At Sacred Heart, they were above and beyond. At KMC I am working on being more involved to help bereaved parents. Right after we had Aiden we were given a packet and told we had to contact the funeral homes within 24hours. That was that. So, I intend to develop a more tactful way of helping parents with funeral arrangements, or anything of the like. Also, KMC had a supply of premature clothing that was not offered to Aiden. I found this heartbreaking. My child is just as deserving of clothing as the next child.

If you could do something to improve the quality of your life as a member of this population what would you do?
Be more involved and spread the word that there are lots and lots of bereaved parents here to help any family through their nightmare. I have even given out all my personal information to KMC so I can come in and assist if a parent asks for help.

What were other family member’s reactions?
This was covered in the beginning…

How was the grief immediately, 6 months, one year, five years after the event?
Immediately, it was gut-wrenching. I couldn’t leave the house, I cried so hard I couldn’t keep food down. I really didn’t want to do anything except sit and pretend it didn’t happen. I just wanted my babies back, I just wanted to erase the last few days completely. My belly was gone, my breast were huge and I had no children.

It is now six months later, and I still don’t go a day, let alone an hour, without thinking of my boys. My heart still hurts and I have my moments, but for the most part I have overcome. I have learned how to not focus on their death, but the blessings in disguise that this experience had given me. I will forever feel them with me.

What was the difference between you and your partner during and after the event?
Well, obviously, as the mother I was physically with them for the entirety, so my connection was different than that of my husbands. He was just as excited and loved them just as I did, but he had only for the first time, felt them kick the night before I gave birth.

My grieving differs because I am a woman, and a mother now. I am fully gushy, mushy, lovey-dovey emotions and hormones so I was a mess. My husband was a rock, he held everything together. He still cried and showed his pain, but it was different. I think as a man, he felt like he had to just keep moving on for us. He still to this day, can’t watch TV shows that have anything to do with this sort of experience, and he is also very passionate about being involved just as I am.

How do you define coping and what does it mean to you?
Coping to me is understanding your loss and fitting it into your life. Cope is finding a “new normal” because nothing will ever be the same again. Coping doesn’t mean crying for days and moping around, it is just your body and mind’s way of reasoning and pulling you through the worst days of your life.

Is there anything you wish would have happened differently surrounding the experience?
HA! Wish it never happened….

I wish I would have know what was happening before my water broke, so I could have spent more time at Sacred Heart with both boys. I had a check up that Monday, but that is when my doctor assured me it was just round ligament pain. There is nothing he could have done to stop the labor, but we could have had more time to gather our family and thoughts to what was about to happen.

What else do we need to know?
Communication and connection with your patients is above all, the most important. Medical professionals are taught to not get ‘personal’ with patients, but sometimes the incident requires it. The doctors and nurses at Sacred Heart were so great, simply because they took the small amount of time, to get to know us, to share their stories and connect. One of my doctors found out I work at a winery and we had a long conversation about wine and vineyards. It had nothing to do with my experience, but it was something, and I will always remember her, because for a moment I focused on something other than the nightmare I was living and escaped. She took the time, and I am grateful.

You have to understand that your patients are experiencing the most devastating and heartbreaking event(s) of their lives and you are running the show. If you cant connect, be compassionate. Don’t rush, don’t ignore. The memories we have of this moment will be all we ever have of our child(ren), so make sure you take the time to make it a moment worth remembering.