Support Baby Isabella's HLHS Journey

Hi, our names are Caleb and Brianna. As of June 2022, my wife and I got married, moved away to a new city in Central Illinois with the hopes of starting and growing our lives together.

Earlier this year, we were blessed with the coming of our rainbow baby girl, Isabella Nichole Ackers, who is estimated to arrive this New Years Eve (12/31/2024.)

We recently received news that Isabella has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Additionally, her atrial septum valve in her heart is at risk of become restricted. HLHS is a rare congenital heart defect that causes the left ventricle (or lower left chamber) of the heart to be severely underdeveloped and unable to circulate oxygenated blood properly to the body (meaning she basically has half a working heart.) This diagnosis of HLHS means our baby girl will need a minimum of 3 open heart surgeries.

What makes her case so rare is that this is compounded by her atrial septum valve looking like it may become restricted in utero. This means her heart will also need a stent placed in her valve. This stent surgery will help blood and oxygen flow properly. Right now she does have a small hole for blood and oxygen to get through but it is very small.

After receiving all this news we were told Isabella will need 4 open heart surgeries and the city we live in cannot perform any of these surgeries because of the severity and high risk of the stent surgery that needs to be done before the HLHS surgeries.

The first surgery will be a stent to expand the atrial septum valve. The stent may have to be placed in utero around 28 weeks, if it becomes anymore restricted or changes in anyway. The stent surgery is a very high risk surgery and because this surgery is so new the only places in the world that can do this surgery in utero are Houston TX, Boston MA, or possibly an area out in Michigan (Michigan just starting to do this new surgery.) If nothing changes with her valve, they can possibly wait and do the stent surgery emergently after birth but, this surgery still cannot be performed in the city we live in. We are currently in talks with Chicago (still 3-4 hours from home) to see about the possibility of them doing the stent surgery after she is born, if the valve doesn’t change and they don’t need to go in utero.

After many discussions with different specialists about where Isabella would get the best hospital care, we have chosen Houston, TX to do the surgery in utero (if the valve changes). Being in talks with Texas Children’s Hospital, they have determined we would need to relocate when Brianna is 36 weeks pregnant and then for a minimum of 6 months (if no complications arise), where our baby girl would be in the NICU for approximately 5 months.

The next three surgeries for the HLHS would require rewiring her heart. The first surgery called the Norwood procedure, being a week after birth, where Isabella will be in the hospital for recovery until the second surgery called the Glenn procedure, when Isabella is 3-4 months old with a month recovery in the NICU. She will also need to see a cardiologist and be on medications the rest of her life to make sure her heart stays strong and healthy after these surgeries. After these surgeries, we would get to return home when Isabella is about 5 months old. We then will have to go back to Houston for her third surgery called the Fontan procedure, when she is around 3-4 years old. After all these surgeries, this would not be a permanent fix to her heart only temporary. Eventually Isabella will need a heart transplant.

After all this news, Isabella has been getting monitored very closely (every few days) by doctors in our area. We also are having to go to Houston for a few evaluations before her arrival in December.

All of these unexpected complications have caused financial struggle for us. Although we are working hard to put this situation in God’s hands, no part of this has been easy. We have many travel costs ahead of us, along with food expenses, housing expenses, transportation expenses, and heaping medical expenses.

Despite receiving this sad news, we are not giving up on our baby girl and we are going to do everything we can for her. We believe God will provide for our family and prayer is the biggest blessing anyone could give us. We are needing/asking for many prayers that God will give her a new heart/repair her heart, that my wife and I will have the strength and peace to get through this, and that our baby girl will survive this journey and have the biggest testimony.

We are asking financial assistance for housing expenses, food expenses, hospital expenses, and transportation expenses. Words could never describe how thankful we are for your love, support, prayers, and anything we receive.

Please share this with anyone you can and keep Isabella in your thoughts and prayers.

Thank you so much.