Lena Hall Lena Hall Medical Updates

First post: Jun 25, 2022 Latest post: Sep 5, 2023
Welcome! This is a site dedicated to Lena Jace Hall's health journey (pronounced Lee-na). On this site you will find regular updates in the 'journal' section, extra pictures in the 'gallery', and we'll keep updating 'ways to help' as needs arise (we'll have a link to a gofundme in early July).  We invite you to start by reading below to learn what brought us to this moment. 

Every bit of your prayers, messages, and support are meaningful to us, reminding us that we don't walk this road alone. Thank you for visiting!

Family Background
Hi there! We're the Hall family-- Travis, Emily, Mercie, and Lena. From 2013 until February of this year (2022), we were living in the United Arab Emirates. Our work felt very purposeful as our goal was to see families blessed through education projects across the Middle East. Little did we know, that we would be the ones most blessed. Our whole life as a family has been overseas. Both Travis and I (Emily) went as single people, met, and got married in 2015, and had Mercie in 2020. Mercie's birth was a traumatic one, life-threatening for Emily and hard for Mercie as she was born with physical difficulties (clubfeet, and amniotic bands on her fingers and toes). As followers of Jesus, we knew that God loved us but we had to learn what that love meant as we faced such despair and difficulty. We are still learning that...Even though we loved the UAE and the people there, to be closer to family and medical care for Mercie, we decided back in March of 2021 to return to the US (and specifically, Chicago), with a target to finally make the transition in February of this year, 2022. 

In the fall of 2021, as we were busily preparing to move and Mercie was busily growing teeth, learning to crawl, and making progress in her clubfeet treatment, we were surprised by the discovery that baby number 2 was on the way! The trauma involved with Mercie's birth added a layer of nervousness and fear to the joy and excitement we felt at this news. More than anything else, it felt overwhelming-- how would we move across the world with a toddler while I was pregnant? How would we find a stable place to be by the time this baby was born? Would this baby also suffer from some complications or disability?

Light and Healing
Fortunately, we follow a God who knew of the crazy journey on which we were embarking, and had plans in store for us to provide exactly what we needed, just when we needed it. We miraculously found and closed on a house in December of 2021, having only seen it on video as Emily's parents saw it in person. We were given the opportunity to do counseling and process the trauma of Mercie's birth before having our second child. When we finally made it to the US in February, we were able to be a part of Emily's younger brother's wedding the same weekend as walking through and closing on the house we had found. We had decided to give birth in Texas with Travis' family in order to spend several months with them, and when we arrived we continued to find provision after provision, establishing medical care quickly and finding two used cars for the price of one (amazing in this economy). As the pregnancy progressed, we were able to prepare for our house and reestablish connections with our family and friends after being gone for so long. As the time of giving birth approached, we decided to name our daughter Lena Jace, which means light and healing, because of the immense difference we were experiencing with this baby compared to the previous one. Overall, we felt well-cared for and as prepared as possible to transition to Chicago once Lena was born. 

Lightning Strikes
On Saturday, June 18th, at 3:30am, I woke up to my water breaking midway through the 37th week of pregnancy. Excited and nervous, we headed to the hospital for what we hoped would be a natural (maybe even medication-free?) birth. Within a few minutes of getting to the hospital and beginning fetal monitoring, it became clear that Lena was not tolerating my contractions. We would hold our breath in terror as her heart rate dropped from 160bpm to 60 each contraction, waiting for it to come back up between. Doctors quickly decided, with our strong agreement, that we needed to do a C-section as soon as possible-- normal labor was not possible, for reasons that would soon become clear. When the doctors began surgery, they discovered that the incision from the previous c-section made in the UAE was "coming apart at the seams" and the uterus was near rupture when the c-section was performed. If it had been delayed, it may have been a life-threatening situation yet again for Emily. Thankfully, that was not the case and the C-section was performed successfully without complication from there. Lena was born at 5:42am  beautiful and rosy. Unfortunately, the hardships were not over yet.

Things get steadily darker
Scans by the specialists before birth had shown a possible obstruction in Lena’s esophagus, so one of the first things the doctors did when she was born was to put a tube down her throat to check her airways and upper digestive tract. It became clear that her esophagus does not reach her stomach, so she could not swallow without risk of suffocation from fluid going into her lungs. Additionally doctors noticed that her anus was in the wrong place— it was too close to the vagina, and not in the appropriate cluster of muscles to enable her to poop correctly. The next 24 hours held a transfer for her to the NICU at a different hospital and several more scans, one of which showed that she also has an extra half-vertebrae about mid-way up her spine. Doctors also feared that the gap in her esophagus indicated there were likely gaps in her intestines as well. She was officially diagnosed with VACTERL syndrome, a condition that affects the Vertebrae, Anus, Cardiac, Trachea/Esophagus, Renal, and limbs. 

As doctors learned more and as I recovered from the C-section, we got the call that Lena would need two operations at one time to sustain her life going forward— the insertion of a Gastro-tube (G-tube) to enable her to receive milk, and a colostomy bag in order to allow her to poop. The surgery would happen Monday morning, a mere 48 hours after she was born. 

Some Good News!
Mid-surgery, the doctors were able to examine Lena’s intestines and, because no gaps were visible, decided that she didn’t need a colostomy bag. This is a huge relief, and one less surgery she will need later in life (the reversal of the colostomy). Additionally, doctors were able to successfully insert the G-tube even though her stomach was only about 1/3 the size of a normal infant’s, since she hadn’t even been able to swallow her own spit in the womb. As of Wednesday, June 22nd, she was able to begin getting milk through the G-tube, slowly enlarging her stomach and enabling her to grow. The doctors believe that Lena only suffers from 3 of the elements of VACTERL syndrome, Esophageal atresia (disconnection), imperforate anus, and vertebra anomaly. While this is such sad news for us, we are especially thankful the heart, kidneys, and limbs are healthy!

The Long Journey Ahead
The doctors believe we have to endure a very long time in the NICU.  The successful G-tube surgery really just prepared Lena for the future surgeries to correct the issues with which she was born. Her anus will have to be relocated to the correct muscle-grouping at around 3-6 months of age. Two weeks after healing from the G-tube, she’ll have a dye inserted into the tube to determine how far the esophagus reaches from the stomach toward the other half of the esophagus connected to the throat. Depending on the distance between the halves, she’ll have 1-6 surgeries to repair and connect them. The hardest part is that until that esophageal repair happens and she can swallow, she has to remain under 24/7 care in the NICU with constant suction down her throat so that she doesn’t suffocate on her saliva. She’ll have to live in the NICU for at least a few months, if not a year or more.

As we mentioned earlier, we had already bought a house in the Chicagoland area and our original plan was to be in Texas only long enough to give birth. The doctors want to treat Lena in the location where we will be living, so they are initiating a medical transfer flight from Austin to Lurie Children's hospital in downtown Chicago, where she will be able to have all the surgeries she needs. The hospital is over an hour away from our house, so if we are to visit her every day, that's another hurdle we'll need to overcome.

All this to say, the future seems daunting. Our strength wears thin. We cling to God with wavering faith as we face the traumatic birth of not one, but two children. We continue to pray for big miracles. We continue to suffer from despair in this desperate place, but we've heard your prayers on our behalf and are thankful for your faith. We take each day at a time, aim to love each other as best we can, and trust in a God who keeps his promises somehow. Who knows what tomorrow will bring?

Thank you for taking the time to read this, and thank you for walking this long road with us.