We had another ultrasound on Thursday, March 23rd. We are working toward a plan for Elliott’s arrival and the next few weeks will move quickly. We also decided to use this post to address what we’ve learned as grieving parents and what this new reality has taught us. This is a long, but very necessary post.
Brian, Elliott, and I went to Mott on Thursday for our first ultrasound since receiving our amniocentesis results. We were excited to see her, since she’s always putting on a show at each scan. Now that we know her official diagnosis, this ultrasound wasn’t nearly as nerve-wracking as the previous ones; we knew to expect discouraging changes in her skeletal structure and just hoped that these changes wouldn’t be too radical quite yet.
In our previous scans, we could see that Elliott’s bones were straight and strong, which led to some confusion at first. With Thanatophoric Dysplasia (TD), it’s very common to see curved long bones, which resemble telephone handles. We hadn’t seen this in any prior scan, but as soon as the tech put the probe on my belly, Elliott’s femur came into view, and sure enough, we could see the slight curve in her leg starting to form. What makes TD lethal is the inability for lung tissue to develop inside of the restricted “bell-shaped” thoracic cavity, as well as brainstem compression due to narrowing at the base of the skull. Elliott does have a narrow bell-shape to her chest, and it’s quite visible on ultrasound. However, at this time, her heart is not being constricted, which is promising. Her diagnosis is still life-limiting, but the lack of severity in her chest size means we may get more than 1-2 hours of life with her that is common with TD. In some rare cases, babies born with TD can live for a few days before their little bodies give up.
After our scan, we met with our genetic counselor who confirmed that Elliott has Thanatophoric Dysplasia Type I. There are two types, and those are differentiated by the clinical symptoms seen on ultrasound. As mentioned above, Elliott has a large, but symmetrical head, a small chest, and bowed long bones. Type II is more severe as far as head size and shape, but both are lethal.
Our next step is preparing for Elliott’s arrival. As explained by Dr. Berman, our maternal-fetal medicine doctor, we will most likely not be able to carry Elliott all the way to her due date of July 3rd. We will have frequent ultrasounds to watch her size, which will help determine when to induce labor for the best chance of meeting her alive. There are many factors that go into choosing when to induce labor, including what is safest for me and what those decisions mean for future pregnancies. We will also be having a full day of meetings at Mott on April 12th. On this day, we will have another ultrasound, followed by meetings with palliative care and Dr. Berman. Palliative care is a team made up of doctors, nurses, social workers, and others who will guide us through the options we have for Ellie before, during, and after her arrival. During this meeting, Brian and I will develop a plan with them that is based around our desires for the day that Elliott makes her debut into this world, all centered on a peaceful and pain free existence until she passes. Our meeting with Dr. Berman will be focused more on our desires for the day, including all details from what kind of labor and delivery we want to what visitors are welcome. We are so grateful to be supported by a team who understands that even the smallest request is important to us on that day.
In the interim, Brian and I have been meeting with a psychologist who specializes in counseling parents experiencing infant loss or poor prenatal diagnosis. At our last session, we discussed our mounting frustration regarding those who seem to want to deny our grief. Brian and I are in uncharted territory, both as first time parents and parents who will lose their firstborn child. There is no handbook for this, and so we are fortunate to have expert guidance on how to manage societal interactions during this time. Instead of keeping this frustration cooped up, Dr. Leon justified our resentment and encouraged us to confront it.
We are eternally grateful for the overwhelming support and love we have received during the past two months. We have been in and out of a fog and the barrage of support keeps our spirits up even on the darkest of days. We do not wish to come across as ungrateful or hopeless, but if this post can help educate anyone on how to approach a difficult situation in a compassionate and sensitive manner, then we feel that its purpose outweighs any possible offense taken while reading it.
We understand that the path we are walking is not common or comfortable for anyone involved. However taboo this topic is, it is not our burden to bear for anyone but ourselves. We are busy grieving and preparing to meet our daughter, and we cannot spare any extra energy nodding and biting our tongues when people offer up anecdotal stories of a “cousin who knew a friend whose test results were wrong.” Brian and I have to wake up everyday and face this new normal. The fact of the matter is that amniocentesis results are 99.9% accurate. Elliott’s DNA was analyzed by a large laboratory for a month, and the genetic material in every cell of her body is flawed. To further reinforce the severity of her diagnosis, “thanatophoric” has Greek roots and translates to “death-bearing.” This fluke of nature could not be prevented and cannot be fixed. When others tell us of a test that was “wrong” they are most likely misunderstanding the accuracy or purpose of that test. There are so many prenatal tests, and some just look for markers that suggest the probability of a disease occurring. However, an amniocentesis is a direct look inside the genetic material that makes up every fiber of the human body. We are not in denial; we are not hopelessly grieving; we are not insensitive. Brian and I have to prepare for the inevitable reality of our daughter’s short life. By denying that grief, we only delay our own healing. Yes, there are cases where babies with TD have survived past infancy. However, these cases are isolated and due to extreme medical intervention. Those children live a life that we do not wish for Elliott. Please don’t compare those stories to our journey. It is not a path we are interested in taking Ellie down.
Along with the inspiring support we’ve received, we have heard many well-meaning but poorly executed comments over the last few weeks. What many don’t know is that some of these comments are hurtful and destructive for a grieving parent. Among them:
- This is all part of God’s plan: I read a great quote the other day that addresses this insensitive and common phrase. It is easy for someone to say that something is God’s plan when they are not the one experiencing it firsthand. Brian and I struggle to understand how any deity could bestow such a difficult thing upon anyone for any reason, and this comment only demeans our situation. Not to mention, if this is some cosmic plan from the heavens, I think we can all agree that it’s a pretty awful one and doesn’t need to be discussed. I think it is also important to note that in times of grief, religion could be left out of discussion. In many cases, parents who are grieving may be angry with God or may have varying beliefs than the person offering comforting words. It is possible to adequately comfort someone without mentioning religion.
- Just wait and see: This one is perhaps the most upsetting. It makes Brian and I feel guilty for moving ahead knowing what will happen to our innocent baby after birth. It seeks to deny our grief and chalk this whole thing up to a medical mistake. I am a nurse and I trust medicine and the technology we have. Is it sometimes wrong? Absolutely. But when even the untrained eyes of my husband can see her imperfect bones, it’s hard to stick our heads in the sand and pretend this isn’t happening. Dr. Leon assured us that we are grieving appropriately. By ignoring the facts, we would only be setting ourselves up for complete and utter devastation when Elliott does pass away. We know we have to go into the hospital with a memory box instead of a carseat, that we’ll only need one outfit for her, and that we will leave without a baby in our arms. It is heart wrenching to even write about, but it is our truth and one that needs to be respected.
- We shouldn’t be planning a funeral until she is here, just in case: This is another comment that has been hurtful. I cannot put into words how painful it is to look for an urn that is suitable for a newborn while that baby is still rolling around in my belly. Every single time I have sat down to call funeral homes, Elliott kicks me and sends me into a tailspin of tears and anger over the complete unfairness of it all. My response to this one is simple: keep your opinion to yourself and stay home on the day of her memorial service. We don’t want to be planning a funeral for a baby anymore than you want to attend one. But we also don’t want to be in the depths of our grief after she passes and trying to plan a memorial then either. It’s a lose-lose situation and insensitive comments like this are completely unnecessary. Brian and I must prepare for all outcomes, and unfortunately this is one of the most important arrangements that has to be made.
After discussing this issue with our psychologist and each other, we think it would be beneficial to list what would be helpful to wish, hope, or pray for. We aren’t naive enough to think that there will be some miraculous change in Elliott’s diagnosis. Like I mentioned above, we have to remain realistic and prepared, and can only hope for what Dr. Leon called “small miracles.” Often, people refer to miracles as something huge and amazing, such as Elliott being born completely healthy. We know this will not be the case. Instead, we are hoping for little miracles, such as:
- Elliott being born alive: This diagnosis carries a high risk of her being stillborn. It is our utmost desire to meet her alive. We want to hear her cry and see what color eyes she has. If you want to pray for something, this is it. We don’t care how short or bowed her legs and arms may be; we want to hold her and be able to tell her how much we love her.
- Elliott living for longer than expected: The average length of life for TD babies is 1-2 hours. We’re grateful for any amount of time she gives us, but we would be blown away if she lived for longer than a few hours. It would be miraculous to us if we had to scramble for an infant carseat so we could take her home on hospice for a few days. That would be exceeding all expectations, and therefore, a miracle.
- Getting the natural birth we desire: Our birth plan is still on shaky ground. At this time, it remains unknown if I will need to have a c-section. This would mean that I would meet Elliott while strapped to an operating table, being sewn back up from major abdominal surgery. Because we don’t know how long she will live for, this option terrifies me. What if she dies while I’m still in recovery? If you want to pray, pray for a healthy and normal delivery.
- That all of our immediate family can be present and meet Ellie: We want our parents and siblings to be able to meet the newest member of the family while she’s still here with us. It is among one of the greatest wishes on our birth plan that family be present and able to stay as long as they wish.
This is our wish list, of sorts. Please don’t tell us you’re hoping for a miracle and that the doctors are wrong. It’s harmful to us and our grieving process. If Elliott comes out and is a screaming, feisty, healthy baby, then we’ll have a different story to tell, but unfortunately, this is the harsh reality of our situation and we must honor her story and how we are living it.
Before you offer words of comfort to a grieving parent or family member, think of how it would sound if you were on the receiving end. It may sound good or make you feel better, but it does little to heal the Elliott-shaped wound we carry with us day to day. Now, and in the next months, we need our support system to shoulder our pain, not deny it. We understand that we are not walking this path alone. Our parents, grandparents, siblings, and friends all hurt for us. The comments I used as examples have been isolated events, but can sometimes overshadow the outpouring of love and support that we have. Instead, ask how we’re doing. Ask what you can help us with. Tell us that you’ll never understand why this happens to people. But please don’t seek to downplay the enormous weight we have to wake up to every morning.
Below are links to articles that may help people to understand more of where the passion behind this post came from. Some are stories of other parents who had to face a diagnosis like ours, and some are informational. Our hope is that Elliott’s story will serve some sort of purpose. I hope this post helps everyone to stop and think before they offer words of comfort to a grieving parent. Sometimes what we think is comforting is only consolatory to our own ears, and not the recipient.
I wish you could have been there for the sun & the rain & the long, hard hills. For the sound of a thousand conversations scattered along the road. For the people laughing & crying & remembering at the end. But, mainly, I wish you could have been there.
– Brian Andreas, Story People