We are Dylan and Mackenzie Bronkema. We have a 3 year old daughter Callie and 1 year old son Caden. This is the story of our son in utero, Liam Joshua Bronkema.
Liam was diagnosed with Trisomy 13 (T13), or Patau Syndrome, on January 9, 2024, at 26 weeks gestational age. Patau Syndrome is a rare genetic disorder resulting from an extra chromosome 13. It presents with severe intellectual disability and physical abnormalities, and is what the doctors call “incompatible with life”. What that means is babies with this disorder cannot live outside the womb on their own. Even with significant medical intervention, they cannot survive for a long time. Many T13 babies are miscarried, and of those that survive birth, most do not survive more than a week. It’s about 1 in 15,000 live births. I don’t think it’s a leap to say this is every parent’s nightmare.
We found out we were pregnant with Liam on July 28, 2023. What a joyful day! Callie was 2 and Caden 1, and with an April due date we’re on track to have 3 kids 3 and under, with Liam on target for 2 years after Caden. We got to share the news with family by putting a “big brother” sweatshirt on Caden, just snuck it on him and waited for the first one to notice. Precious moments, sharing in the joy of new life with our families. Liam was active from the start, and Mackenzie could feel his kicks before those from either of her other pregnancies. Definitely was on track to be a soccer player. The appointments that were to follow all went according to plan, with a strong heartbeat and activity. He’s a rascal and has been giving Mackenzie nausea since the start, and kept that up right through the first trimester supposed-to-be cutoff for those symptoms. He’s a big night owl, so wanted to give Mackenzie sleepless nights while in the womb, even if we don’t get them out of it. Though I know we will get sleepless nights, just not to hold him or comfort him.
We went to the 20-week ultrasound scan and got more good news, baby was growing on track and had a strong heartbeat. Everything was measuring spot on, but with the way Liam was lying they weren’t able to get the necessary pictures of the heart. They called us back in for a follow-up ultrasound at 22 weeks to try to get those heart pictures. Per usual, he was being a rascal and stubborn, staying in the hard-to-scan position for the heart pictures. This is despite Mackenzie going up and down stairs (3 times), getting some candy, doing some jumping jacks, squats, anything to get this little guy to roll over. They got what they thought they needed, sending us off without concern again. After the doctor reviewed, those pictures still weren’t quite good enough so Mackenzie headed back in for a third scan at 25 weeks. In the same way, we were told we have a stinker on our hands that won’t comply with the few pictures they needed.
This was probably the first instance of some concern for us, since the first two ultrasounds had supposedly checked out, and especially since at the second ultrasound, the tech had said that they got the pictures they needed. Nonetheless, still no bad news or indications of concern until January 4th. We would call this the start of the nightmare. We’re still hoping to wake up.
We got a voicemail from our doctor on Thursday, Jan 4th morning telling us that in the third scan, they detected a heart defect that required further investigation. We were scheduled to leave for a trip the following Tuesday, so we spent the rest of Thursday and Friday trying to get scheduled with the specialist as soon as we could. That Thursday evening Mackenzie got a blood draw for genetic testing of the baby, and the specialist graciously got us in that Monday morning for the echocardiogram.
That Thursday to Monday felt like purgatory as we waited to get more information. Was this heart condition going to heal in the womb and be a normal baby? Would it be a severe problem? Because it took 3 ultrasounds to detect, we thought that surely it was a minor issue and the investigation was precautionary. At this time of waiting, our family and church really wrapped around us with support, prayers, and love. In these moments of fear, you don’t know what you need. We were pleading with the Lord for healing as Moses pleaded with the Lord for mercy in Numbers 14. While that request was not granted, the Lord did provide the peace that doesn’t make sense, as Paul promises for those tempted by anxious thoughts in his writings of Philippians 4. “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” This peace truly does transcend all understanding, that amidst questions about the life of your baby, about the viability of life in your baby, whom you love, your heart can be comforted. We praise God for this peace, and thank all those that joined us, and still join us, in prayer for this peace.
Monday morning, January 8, comes around. After another night of sporadic sleep, Mackenzie drew near to a passage in 2 Chronicles 32. While the Israelites were captured by fear of the powerful invading army, Hezekiah king of Israel held fast to their source of strength. “And he set combat commanders over the people and gathered them together to him in the square at the gate of the city and spoke encouragingly to them, saying, “Be strong and courageous. Do not be afraid or dismayed before the king of Assyria and all the horde that is with him, for there are more with us than with him. With him is an arm of flesh, but with us is the Lord our God, to help us and to fight our battles.” We went in at 7:45 holding fast to our source of strength, for we were not in the exam room alone, but with the presence of the Lord our God.
During the scan, the heart defect that was the cause for the appointment surprisingly looked good. What a relief that was, even if momentarily. Throughout the process of investigating closely the other parts of baby, several slight physical abnormalities were discovered. Despite the fact that the baby was growing as it should, and the fact that any of these abnormalities on their own would represent only a minor concern, the presence of multiple abnormalities together increases the likelihood of a genetic disorder being the cause. It could be a few random things, any of them that could be repaired after birth. It could be a fatal disorder. Your heart fills with fear of the latter.
We sat in the consultation room with the doctor as he explained what he saw, and the possibilities that it could represent. Quite the spectrum of possible outcomes. You block our emotions in the moment to try to grasp what’s being said, to understand the best that you can this potentially life-changing information. We were recommended an amniocentesis, which is a draw of amniotic fluid to be sent for chromosomal testing. This differs from the blood draw Mackenzie had taken on Thursday because it provides all chromosomal abnormalities, whereas the initial test only covers the 3 most common – T13, T18, and T21, which is down syndrome. We elected to move forward with this procedure, and they had us scheduled for the following morning.
So we headed home, with our hearts not knowing how to feel. We had gone in expecting to hear about the severity of a heart condition, and left with the news that the heart is better than expected but with a new spectrum of outcomes, and more likelihood for severe genetic conditions. We were again calling out to the Lord, and our prayerful community was doing the same. It’s in the wake of such feelings that you receive perspective. My beloved Michigan Wolverines raised the national championship trophy that night. I watched numbly with my soul grieving to its depths, while Michigan faithful respond in euphoria and Washington supporters and players in absolute dejection. Everyone knows it’s fun and games, but man, how meaningless is that.
Tuesday morning, January 9 comes forth, a few days deeper into the nightmare. We come into the office for the amniocentesis, which was done successfully and safely. We asked a few lingering questions and looked for some more clarification. After the sample was drawn and while Mackenzie was being monitored afterwards, we learned that the doctor sent off two tests – one for the full chromosomal testing that would be returned in 10-14 days, and another STAT test (24-48 hours) that would target the 3 common abnormalities and the gender, which we still did not know at this point. These are the same targets as Thursday’s blood draw, but more accurate coming from the amniotic fluid than the blood sample which includes the mother and child’s blood.
So we returned to a day of prescribed bed rest in recovery of the amniocentesis, which really was pretty uneventful. Not much new information was given earlier, we expected to get a clean STAT test and find out if there was an uncommon chromosomal abnormalilty in another week or two.
5:35pm we get a call from that doctor, who had told us he’d call regardless of the result. Pretty fast turnaround time for a 24-48 hour test. As I’m trying to get Caden to stop crying and sit down so I can join Mackenzie on the call, we hear the nightmare descend deeper into the hellscape we were in as he says, “We got the results back from the STAT test and we found something.” He goes on to tell us we have a boy, just what I was hoping for to give Caden a forever playmate. Just like my brother and I, they’d be 2 years apart and inseparable. How my heart still longs for this to be true. He goes on to say the baby was positive for Trisomy 13, which is “incompatible with life”. In complete shock and feeling out of body, he goes on to further explain the miscarriage risk, pre-term labor risk, and what we can expect if the baby can survive the birth process. Mackenzie maintained composure and got as much information as you can hope for, or probably much more than you can hope for, considering it’s all just more bad news. I am crumpled on the floor, weeping in the fetal position. Something about humans is still wired to return to that position of safety – a fetus curled up in the womb – when we need to be comforted. We are so grateful that Liam is safe in mom’s womb right now.
Callie and Caden run over and ask “Why are you crying daddy?”. Callie wraps into me while I weep and Caden moves over to comfort mommy. There’s something about the innocence of children. There’s not many things you can think of that feel more unjust than an innocent baby being taken from you, in the womb or out. Caden and Callie went to Mimi and Papa’s house while we threw ourselves to the ground in lament. Weeping, groaning, grieving, our souls destitute.
How do you mourn this? Something that has not yet come to pass but with certainty will. We have found ourselves clinging to one another and to the Lord. We have no words and only tears. Scripture and worship music has been steadily encouraging us of the hope that we have in Christ. Numbness creeps in and tempts us with the promise of no more hurting. Hopelessness waits at the door. Our lives will never be the same. Liam has changed us, and will continue to change us, in ways we never thought we’d experience. You know these things exist, but surely it’ll never happen to you.
Between the suffering, grief, numbness, and disbelief, the Lord our God holds us together. “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.” – Psalm 23. His gift of the Holy Spirit speaks life to our souls, in a dry and weary place where there is no water, only tears.
“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” – 2 Corinthians 4
This brings us to now, Wednesday January 10. We don’t know why this is happening, and never will. One thing is certain, we will never be the same. Another thing is certain, that we will enjoy every last minute we get with Liam, in the womb and out. The kicks and midnight dance parties in Mackenzie’s belly. The scans from here on, the connection we feel with him. Liam – determined, strong-willed, valiant. Growing and fighting for his life despite what’s common in T13 babies. Joshua – God is deliverance. Joshua was faithful and obedient to the Lord, amidst doubt and impossibility.
We choose this name as representation of Liam’s spirit as well as our prayer and posture. That we would remain faithful despite the impossibility of what’s set before us. May the Lord carry us, as we leave the delivery room with an empty blanket.
If you’re still reading this, you are now part of the story of Liam. We need you. We need your prayer. Pray for our kids, who are so excited for this baby to come – that they would somehow find understanding when their brother doesn’t come home. Pray for our souls, that they would not remain in despair. Pray for Liam, that we get the chance to meet him and see his eyes.
Come around us, be with us. When you see us, don’t look at us in pity and say nothing, uncertain of what to say. We don’t know what to say either. Be the body of Christ to us.
Thank you for what you’ve done and what you will do. We have shared some encouraging scripture for us in this time, some worship music that has spoken words that we can’t, and pictures of our family and journey with Liam.
Please join us by posting in the comments encouraging scripture, songs, or what you feel will uplift our souls.
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