Clarifications and the Latest
Last fall, we shared the news that our unborn son, Benjamin, was diagnosed with a severe heart defect, Hypoplastic Left Heart Syndrome (HLHS). Since then, we have committed to sharing our journey and updating when appropriate.
Clarifying Benjamin’s Condition
Since HLHS is new to most, it has led to misunderstandings and many questions. We thought it would be helpful to clarify what exactly HLHS is and what Benjamin and our family are facing.
In brief, the left side of Benji’s heart, which is most important for heart function, did not develop properly. His heart is only half-functional.
Barring a miracle, HLHS is fatal shortly after birth without prompt medical intervention. The heart cannot heal on its own.
The standard medical intervention includes three major heart surgeries to reconstruct the heart altogether. The first surgery (“Norwood”) will occur days after birth. The second (“Glenn”) will happen when Benji is about four or five months old. The third (“Fontan”) will occur when he is two or three years old. All three are very risky, particularly the first. The time between the first and second surgery (“interstage”) is where the highest risk of fatality lies.
Medically speaking, the surgeries are palliative, not curative. In simple terms, if the surgeries are successful, Benji’s heart is not fixed but merely patched. The surgeries aim to prolong and improve Benji’s quality of life, but they do not resolve the condition.
Benji will have certain limitations and health issues related to organ strain throughout childhood, and he will require a heart transplant in the future as his heart eventually fails. These transplants usually happen in the late teens.
The heart transplant is also not a fix but another extreme patch job. Those with HLHS who receive heart transplants typically live another 10–15 years before passing away. The oldest person to survive HLHS is in their 30s.
The Latest on Benjamin’s Heart
Every doctor we have spoken to confirms a classic case of HLHS, and each visit reveals Benjamin’s heart arresting (meaning, not growing) as expected.
Though this is the case, we have received some good news.
The right side of his heart, which will bear the sole responsibility for heart function post-surgeries, looks healthy. Though it remains underdeveloped, the left side of his heart also has slight blood flow, and the large blood vessel going from his heart to the rest of the body (ascending aorta) is a bit bigger than expected, making it a more visible target for the surgeon during the microscopic surgery. Our cardiologist was pleased to discover and tell us this news! Aside from his heart, Benjamin is developing well and is a strong, healthy boy. He is in the 75th percentile for size and weight, which is good. The surgical procedures and recovery time are typically improved when the baby is bigger and stronger.
Hospital and Relocation
Early on, we decided we would not move out of state unless necessary. Thankfully, we had two great options in Florida for Benjamin’s care. After much consideration, we have chosen to work alongside the pediatric cardiology team at The University of Florida’s Shands Children’s Hospital in Gainsville. Though Gainsville is three and a half hours away, the team encouraged us not to plan to relocate long-term since we live in-state.
We anticipate arriving in Gainesville a few weeks before Benji’s due date and will remain there until he is sent home after the first surgery. We will repeat this for the other two surgeries. The length of recovery time post-surgery varies for every baby, situation, and hospital. The average at Shands is between 4 and 8 weeks each time. Once Benji is home, we will monitor him with the help of our local pediatric cardiologist and the team from Shands.
We praise God for the fantastic team coming together and for the chance to keep our home in Port St. Lucie.
Caring for Mom and Dad
Recently, we had some friends over for dinner. After dinner, we were sitting around talking, and one of them asked, “What is the best way to care for you guys right now?” We could — and did — say much about this, but for now, here are a few thoughts that come to mind.
Firstly, our doctors are optimistic that Benji’s case of HLHS will be fairly straightforward. The surgical team that will operate on him is also confident that their skills and experience will result in a favorable outcome for our son. We are grateful for this and share in their optimism.
Secondly, we have often been surprised to hear of someone whose child has HLHS or something similar and an accompanying success story. We appreciate hearing the success stories! We sincerely rejoice with anyone who has been through the challenges of HLHS and seen it get easier over time! The stories also give us hope for better days and that not everything is doom and gloom.
While we’re optimistic and hopeful, we are also mindful of the reality, severity, and gravity of our situation. While our doctors are expectant for a straightforward case, they continue to remind us that “straightforward” in infantile congenital heart failure is still incredibly complex. Almost all cases of HLHS come with complications, unexpected additional hospital stays, and other physical, developmental, and/or mental health problems for the baby. And while many success stories exist, tragedies do, too, and the unique details of our story are still largely unknown.
What we do know is that the newborn season will include waiting during lengthy, risky procedures, stitches, feeding tubes, an extended hospital stay, and the burden of at-home care during interstage. After that, there will be years of weekly or monthly doctor’s appointments, lifelong medications, more surgeries, and adjustments. Ultimately, all of this will be a constant reminder that our days with our son are numbered, for statistically, he will pass away in his 30s, if not sooner, and we will outlive him.
While we do not know all it entails, we have a long, difficult, lamentous road ahead. In this, we have recently been thinking about Paul’s words to his apprentice, Timothy:
2 Timothy 4:5 ESV
Always be sober-minded, endure suffering, do the work of an evangelist, fulfill your ministry.
2 Timothy 4:5 NLT
You should keep a clear mind in every situation. Don’t be afraid of suffering for the Lord. Work at telling others the Good News, and fully carry out the ministry God has given you.
This is a helpful reminder that we should neither be blindly, overly optimistic, nor remorsefully pessimistic but simply realistic and clear-minded about what we are facing. It is also a helpful reminder that within our suffering, there is a unique opportunity to share our faith and hope with those we will come across who might not otherwise interact with a believer. We genuinely hope for these opportunities. Yet, we also recognize that within those opportunities, we must experience and endure suffering; we must go through it. We don’t get to skip to the end. We must walk that long, difficult, lamentous road.
Circling back to our friend’s question, the people who have best cared for us are those who acknowledge that and understand the tension between optimism/hope/rejoicing and doubt/fear/grief, and either join us where we are at that given moment or give us the room to navigate it in real-time without the expectation of a particular response.
To say it as simply as possible, caring for us is walking with us. We continue to share our story to invite you to this. That inevitably comes with the risk of being dismissed, misunderstood, or forgotten in the darkest moments. So please, walk with us — endure this, go through this — with us. Here are some thoughts on how to do that:
Don’t minimize the difficulty of what we are about to experience by pivoting to share someone else’s positive experience. No one wants to see a loved one, let alone a baby, in such a critical state. We are about to, and that is scary and hard. We are not faithless or unbelieving, just afraid. Meet us in that fear, or let us be afraid.
Please don’t get out ahead of our story, for we are currently in the thick of it. HLHS is not the story we imagined for our family; some days, we sit in sadness. We are not faithless or hopeless, just sad. Leave room for us to mourn, or come mourn with us.
Do celebrate when we share the good news about the generosity of others, Benji’s health, or one of Edmund’s (our other 1-year-old son) milestones.
Do understand if we are slower to respond or update infrequently as our responsibilities and demands increase.
Do encourage us to keep our faith and our family at the forefront amidst these difficulties.
Do help us meet our financial and practical needs if you are inclined. We include ways to do so at the end of this entry.
And, of course, pray. We continue to pray daily for a miraculous healing. We believe God can do that. But we also recognize He may not choose to do that for us, in which case our needs and concerns are substantial. Here are a few:
Lodging. We are hoping to stay at the Ronald McDonald Respite House in Gainesville for the entirety of Benji’s hospitalizations at a modest daily rate. We are on the waiting list, but unfortunately, we won’t know until only a couple of days prior each time. Please pray we can get in. If no room is available, we must find alternative, more expensive options (extended stay hotel, Airbnb) quickly.
Labor. Benjamin is due at the end of February. In these exceptional cases, the hospital’s protocol is to induce mama three days before the baby’s due date. For many reasons, Chantelle would prefer to go into labor naturally. Please pray Chantelle will go into labor naturally and that the process goes smoothly and without any surprises or complications.
Labrador. Our dog, Scout, is a ferocious black lab (actually, he is a very docile, slightly pathetic miniature pinscher, but we wanted to keep the “L” alliteration going) who will need care in our absence. We are unsure what to do about this, so please pray for the best situation for him.
By asking this, we ask people to respond helpfully and Biblically to our suffering.
Romans 12:12–15
Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practice hospitality. Bless those who persecute you; bless and do not curse. Rejoice with those who rejoice; mourn with those who mourn.
Galatians 6:2a
Carry each other’s burdens…
This is the burden the Lord has given us to bear, and we (and Benji, of course) must ultimately be the ones to bear it. But please, as you can, we invite you to mindfully and graciously bear it with us. Thank you for those who already have and continue to do so. We love you.
A & C
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Financial Care
We continue to fundraise to help cover the expenses that insurance will not cover, plus housing, food, and bills, so we can focus solely on Benjamin until we can return to full-time work and ministry. We aim to raise $30,000 and are about one-third of that goal. Donations are tax-deductible through our partnering ministry organization.
To Give: https://www.continuetogive.com/helpbabybenji
Practical Care
If you would prefer to help with gifts instead of donations, we are registered on Amazon. The registry includes postpartum care items for Chantelle, items we will use for respite stay during Benji’s hospitalization, and items for Benji once he is home.
