We found out today Isaiah passed peacefully in utero this week. We feel such an odd mixture of sadness, sorrow, and some relief too, knowing he is at peace. Scheduled to start the induction tomorrow evening at Legacy Emmanuel. Thank you in advance for your prayers and love. 💙
It’s been a week since last we posted, and we’d like to take a moment to update everyone on where we’ve been and what we’ve learned over the last few days. When last we posted, we were waiting until we could get an amniocentesis to determine baby’s gender and get a rough diagnosis of what we were dealing with.
On Tuesday, we went back to the Legacy Emanuel Maternal Fetal Medicine clinic for an amniocentesis, and to meet with the Fetal Care Coordinator, Sonja, about all the services Legacy has to provide for people in our position and for children who are born with some distinct challenges. Despite having heard some disquieting stories about gigantic needles and the doctor’s warnings about cramps and other unpleasantness, the amnio went very well. Stephanie says the needle was less uncomfortable than the innumerable blood draws she’d already been through for all of the cancer treatments and testing from five years ago or so. The doctors told us that the tests ought to have the gender and at least a rough idea of a diagnosis in just a few days.
The meeting with Sonja was fantastic – we are blessed and overjoyed that Legacy has a very, very well developed program for people who find themselves as expectant parents of just about every form of special needs child imaginable. The first thing she did was apologize for not having read through the pages and pages of information in our file – she mentioned that the office was a little busy right now. Sonja said that her office was currently involved with somewhere between 50 or 60 families – a revelation that came as somewhat of a shock to us. It was a reminder that we are not the only people to face impossible odds with the life of a child on the line.
That said, the office has a wonderful partnership with Randall’s Children’s Hospital, and the office is prepared to pretty well do whatever they need to do to meet our wishes and desires. Sonja even said she’d put us in contact with the counselors at Randall’s to help us talk with our other children about what is happening and what will happen with baby. We’re so thankful that the hospital is willing to work with us, and not hold expectations of what we will do with this child or how we will address the issues that will inevitably crop up. They are very much supportive of allowing parents to determine what’s best for their child, and also helping parents remember their baby with photographs, notes, or other mementos, whatever the parents like.
Finally, that brings us up to date. This morning, Stephanie received a call from our Genetic Counselor with the preliminary results of the amniocentesis.
Firstly, the results find that there is definitely triplets in the 18th chromosomes – meaning this baby has some form of Trisomy 18. There is a deeper set of tests that are being run in order to determine to what degree baby has Trisomy 18, but that will take another week or so to hear back on. The counselor said that it is most likely that baby has the most common form of Trisomy 18, which is where every cell in baby’s body is affected by it, but the deeper tests will verify if this is the case or not.
Secondly, we were told that baby is in fact a little boy.
The gender was hugely important to us, because we both felt like it would allow us to name this baby, which we believe is the first step in making baby part of our family. We don’t want our son be something to be swept under the rug, viewed as an unfortunate episode in our family’s history that we simply don’t talk about. We want Evelynn and Sienna both to know that they had a brother, however briefly, and that his tiny life was precious to both of their parents. We want them both to know that they will meet their brother eventually, and that it’s perfectly acceptable to be sad that they can’t get to know, love, and play with him here. Above all we want them to know that his life was just as precious to their Creator and King as anyone else’s is.
We’ve decided to name our son Isaiah. When we first were discussing creating this blog, a verse of Scripture popped into my (Dan’s) head: “Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert” (Isaiah 43:19). We very much feel that this is a wilderness we find ourselves in, and we have no idea where we’re headed or why we’re headed there. At the same time, paradoxically, we believe that God is absolutely charting the course for our family.
I remembered a second passage while putting this blog together, also from Isaiah, and it pretty well perfectly summarizes why we like the name:
Why do you say, O Jacob, and assert, O Israel,
“My way is hidden from the LORD,
And the justice due me escapes the notice of my God”?
Do you not know? Have you not heard?
The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired.
His understanding is inscrutable.
He gives strength to the weary,
And to him who lacks might He increases power.
Though youths grow weary and tired,
And vigorous young men stumble badly,
Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.
We have always prayed that God would be glorified in all that we do as a family. I must confess I have no idea how God is glorified through the death of the person who’s the closest to unstained innocence as it is possible to be on this earth. I don’t know what we’re supposed to be learning, or what God expects for us in this stage in life. All we can do is hold on to the promises He’s already made:
For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the LORD.
Again, we could never thank everyone enough for their prayers, support, kind words, and gifts. It’s all been a little overwhelming.
If you’d like, we could still use prayer:
- Calming down enough to truly sleep has continued to be very difficult for both of us. When it’s quiet, that’s when the worries, concerns, fears, and emotions are the loudest.
- Wisdom in creating the care plan for baby Isaiah – there are so many things to weigh, determine, and decide, we want to do what’s best and what’s right.
- Peace for all of our hearts, and strength for all our spirits. Stephanie, Dan, and Evelynn are all facing challenges in processing such difficult circumstances, and the challenges each faces are different. We have all accepted that God has chosen to call Isaiah home, but that doesn’t necessarily remove the fears, feelings of inadequacy and guilt, or the sadness.
Thanks for bearing with us – we’re not sure how the next few months will go, but we are sure we couldn’t do it without you all!
Dan and Stephanie
Earlier this year, we got a big surprise: ready or not, baby #3 was on the way! This brought a lot of new things to think through: how were going to fit 3 car seats, let alone the gear necessary for 3 kids, in our car? Where was baby going to sleep? How would Sienna adjust to being a big sister? What would life be like with two kids under the age of 2?
One thing we never thought about was, “What if our baby has something wrong?”
Last Friday, Stephanie was anticipating our routine anatomy ultrasound, looking forward to finding out whether we’re expecting a girl or a boy. She had been feeling a little anxiety about the scan, so a few close friends were praying, but after having our two beautiful, healthy girls, we anticipated only good news. Dan had to work, so his mom was able to go and help keep Sienna entertained and get first dibs on knowing the gender.
Things started out normal enough. But after a few minutes, the ultrasound tech grew silent and serious. “I’m going to be quiet now, and just make some measurements. It’s the way I do things,” she said. But after seemingly going over the same measurements again and again, she abruptly announced that she would be back in a bit. Several minutes passed, with Stephanie feeling more and more anxious and certain something wasn’t right.
Eventually, she returned with the radiologist, who took a few more measurements and calmly told us that they were seeing some very concerning things, including a club foot, abdominal abnormalities, and the baby was measuring small. Stephanie’s OBGYN didn’t add any details on the phone, but let us know we would need to see a high-risk OBGYN and would receive a more in-depth ultrasound. “I’m just as shocked as you are,” she said.
Based on the limited information we had, we decided to start doing some research to prepare ourselves for the worst, or at least for the range of possibilities. One real possibility seemed to be Trisomy 18 or Trisomy 13, very serious conditions where the baby’s body contains an extra copy of a chromosome. (Trisomy 21, or Down’s Syndrome, is the most common trisomy.) Stephanie read a lot of blogs and articles and wrote down some questions. Unfortunately, we weren’t able to get in to Legal Maternal and Fetal Medicine until today. It has been such a long, long week. We grieved, we worried, we spent sleepless nights, we wondered what in the world to pray for.
Our appointment today started out with our ultrasound. We were really grateful for the tech, who was kind and kept us updated with her progress: “I’m measuring the arm, I’m looking at the brain…” Her calm manner helped Stephanie to relax. But as we watched, we could tell that things just weren’t right. This little one didn’t move like our previous babies did, and the head shape didn’t look like Evelynn’s or Sienna’s did during their ultrasounds. We also thought we saw some weird things.
After half an hour, she consulted with the perinatologist, who then came to talk with us. The doctor began walking us through what she was seeing. There was so much to say…. from the bottom of this little one’s feet to the top of their head, so, so much was wrong.
Baby does indeed have restricted growth and club feet, as well as an omphalocele (some of the baby’s bowels are outside the body), an abnormal head shape, heart defects, brain defects, scoliosis of the spine, facial abnormalities, and a cleft palate. She also didn’t detect that the baby is moving its legs and feet normally. There is more that was mentioned, but we will have to wait for the final ultrasound report to remember it all. It was a lot to take in. What we do know is that these combined things give baby an extremely poor prognosis.
We had so hoped that we could at least tell the gender and give this baby a name, but they couldn’t determine that. We will have to wait for the results of our amniocentesis to get a final verdict of the gender.
Her feeling was that yes, this was either most likely Trisomy 18 or Trisomy 13, though she admitted there can be other conditions that would cause defects like this so we couldn’t be sure 100% without the amnio results.
We were able to share with her right away that abortion is not an option for us. Our desire is to honor the gift of this baby’s life, and allow God to take him or her home when He deems right. After that, we met with a genetic counselor, and it was really encouraging to find out that Legacy has a wonderful perinatal hospice program. They work often enough with families facing terminal diagnoses like ours, and have an experienced coordinator who can help us with everything from forming a birth plan to planning for special memory keepsakes.
The counselor told us that for babies with these kind of dire issues, they plan on the 90-90-90 guideline: generally, 90% of babies die in utero; of those born alive, 90% die in the first few days; and of those that survive, 90% die by their first birthday.
No one expects to be planning their child’s birth and death at the same time, but that is where we find ourselves.
Our final meeting today was with the doctor who will be overseeing the rest of Stephanie’s care during the pregnancy. She was kind and supportive and kept using the phrase “your baby” which really helped us feel that she will respect and honor our wishes. Some of the first words out of her mouth were, “I’m so sorry you have to go through this.”
There will be some special things to watch out for, since Stephanie has some extra amniotic fluid due to the baby not being able to swallow and process the fluid normally. This happens often in cases like this. They will be watching that to make sure the fluid doesn’t become too built up or interfere with her lung function.
Next week we will go in for the amniocentesis, and to meet with the palliative care coordinator. We should have some preliminary results from the test after a couple of days.
There is so much unknown ahead. To be honest, right now our hearts are feeling pretty numb. Today’s news wasn’t truly a shock after what we’ve read… but it was a sad reality that some of our worst fears have some true. It seems this baby will be going on to eternity very soon. It is hard to know how to let ourselves get attached, how to parent a child who has such a short time to live, how to think and feel and pray.
We know grief and loss is a process…. and so much of this journey will be unpredictable. Stephanie read this quote from C. S. Lewis’s A Grief Observed:
I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process. It needs not a map but a history, and if I don’t stop writing that history at some quite arbitrary point, there’s no reason why I should ever stop. There is something new to be chronicled every day. Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape. As I’ve already noted, not every bend does. Sometimes the surprise is the opposite one; you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn’t a circular trench. But it isn’t. There are partial recurrences, but the sequence doesn’t repeat.
We can’t thank everyone enough for their support, prayers, kind words, and gifts. They are our lifeline right now.
Some things we would love prayer for:
- Sleep. It has been difficult for both of us to rest lately.
- Wisdom for helping Evelynn process. She was so, so looking forward to meeting this baby and while we have kept things very general, she knows the gravity of the situation.
- Peace for our hearts for whatever is ahead. We are at peace with God taking this child before birth, but we know that this labor and delivery will have its own challenges and griefs. We are scared.
This feels like uncharted territory. But we trust that God will “make a way in the wilderness and rivers in the desert” (Isaiah 43:19). He has proved faithful in every challenge we’ve met over the years and we know this won’t be an exception.
Dan and Stephanie