Featured cherub of the week is CDH survivor Jolene Lachance. Jolene is the daughter of Julie and Jason Lachance. Julie is one of the CDH International Texas Ambassadors. This is what Julie had to share about her daughter:
“We found out we were expecting our third child and figured it would be a normal, uncomplicated pregnancy just as our previous two were. However, at our 20-week anatomy ultrasound our doctor said he saw what he thought was a hole in the diaphragm of the baby but it was hard to tell because of the position the baby was in. He said sometimes these things can clear up on their own, and there wasn’t really much to do about it at the moment, so in four weeks we would come back for another scan. At 24 weeks the doctor told us there was most definitely something there and referred us to a maternal fetal specialist. At that ultrasound it was confirmed that there was a hole in our baby’s diaphragm and we were given the left-sided CDH diagnosis and referred to the Fetal Center at Children’s Memorial Hermann in the Houston Medical Center.
Having never even heard of CDH, we were surprised at how bleak the statistics were. Our baby had stomach, intestines, spleen and part of her liver up, but otherwise looked healthy. We learned that other birth defects could be part of the CDH “package” but were ready to deal with whatever came our way. It was decided to deliver our baby at 38 ½ weeks in order to avoid going into spontaneous labor and not having the best possible team ready to go for the arrival. We still didn’t know the sex of our baby (miraculous given all of the ultrasounds we had!) and were delighted to hear a small, squeak escape from our baby girl when she was brought into the world. We decided her name would be Jolene Grace (yes, Jolene like the Dolly Parton song but only because we liked the name Jolene, not because we are die-hard Dolly fans ? – and Grace because we knew that it was by God’s grace that we were given this special gift).
Jolene had her own team who quickly intubated and assessed her, then whisked her off to the NICU, stopping just for a second to say “hi” to mom and dad. One of the most difficult parts after delivery was the waiting. We knew Jolene was in good hands, but not being able to see her immediately, or to get to her myself was excruciating. After a while my husband, Jason, was able to go back and forth between Jolene and I, giving me updates. The next morning I was given the clear to be wheeled up to see her myself. She was so beautiful, but it felt so wrong not to be able to scoop her up and hold her close to me.
The first two days Jolene did great, holding her own. That night, however, she started to fight too much against the ventilator and had a hard time stabilizing. She was moved to the oscillator and given more paralytic to help her relax. My dad remembers coming to see her and touching her little foot, when she then grumpily pulled away, despite all of the medications. That was our first sign she was a feisty one! Day three brought more challenges and the decision was made to put her on ECMO by lunch time. Thankfully she only required VV ECMO, as her heart seemed to be doing its job. After that Jolene was stable and her repair surgery was scheduled for the next day. ECMO was, of course, the thing that every CDH parent dreads to think about – one of the last resorts, if you will. While we were so sad that Jolene required ECMO, we were so thankful that medical technology like this exists and that we could give it a try. The machinery and ECMO trained nurses were amazing – so many numbers and things to keep track of!
Day four brought a successful surgery by Dr. KuoJen Tsao and countless team members. They said our baby girl did great during the surgery but cautioned us that the road ahead would be long and filled with many ups and downs. Jolene’s hernia was given a “C” grade (A being very small, possibly requiring only stitches and D meaning there was really no diaphragm at all). The Gortex patch that was put in place is actually sewn to the ribcage on the outer side! Our fighter continued improving over the next few days, with the heart and lungs moving back to center, fluid dissipating and some pulmonary hypertension luckily resolving on its own. We had so many people from around the world praying for Jolene, and we could feel the love just flowing over her!
On day 8, after a couple of trial runs (this involved clamping the machine and checking blood gas levels to see if Jolene could handle being on regular ventilation, and it took a couple of tries before it was successful), she was taken off of ECMO. I remember Dr. Amir Kahn, the neonatologist on rotation, coming to check on her before he went home for the evening. He said she looked great and headed out the door, then turned around and said “Wait, would you like to hold her, mom?” I was so happy at that opportunity, because I know not all facilities allow parents to hold babies who are intubated and attached to so many tubes and wires. Although a chore, my husband and I held that baby as often as possible, and we know that contributed to her healing.
The logistics of having a child in the NICU are always difficult. We were allowed to stay at the Ronald McDonald House just down the hallway for about the first two weeks, and then commuted the hour and a half from our home every day to see her. We rotated shifts and tried our best to give our older kids (ages 6 and 2 at the time) the time and attention they needed, as well as getting enough rest to keep ourselves healthy. We relied on my mom to take over the household duties and other family and friends helped where they could. It took a village!
The rest of the 60 days in the NICU are kind of a blur…there were good days and bad days, but Jolene proved to be stubborn and resilient. She gradually weaned from the ventilator and all of the medications and started feeding. This proved to be her most difficult challenge, as her body didn’t want to cooperate. Even when it did, there were always other challenges, including a clogged ND tube, which it turns out, Coca-cola is great for unclogging. ? We are so thankful for nurses who knew little tricks like this, and for all of them who cared for Jolene as if she were their own. As much as doctors deserve credit for saving our little CDHers, the nurses perhaps deserve more. They are on the front lines of battle and see these babies every minute of the day and night, advising the doctors and comforting the parents. When we were able to bring our oldest child up to visit her little sister, the nurses were great – preparing her and helping her to feel at home in what could be a scary place.
Jolene was able to miraculously go home with no oxygen and no feeding tubes exactly two months after she was born. We worked really, really hard on getting her to be able to eat enough to not only survive but thrive. After going so long without any oral stimulation the natural sucking instinct had all but disappeared, and she proved to have a mad gag reflex, probably from all of the tubes that had been up and down her little throat. With OT and PT we did it though! We were so happy to have our family all together finally.
Things were a little different once Jolene was home – we didn’t go out to public places as much as we did before, and we were extra cautious with our school aged children bringing home germs. We did have one scary occasion when Jolene caught an “RSV-like” virus at age 2. We started off at a local stand-alone emergency room (since it was a weekend), ended up being ambulanced to the local hospital just as a precaution, and then a day and a half later Jolene was flown via helicopter to the Houston Medical Center (where she was born), because she just kept getting worse and worse. Jolene was inches away from being intubated again, but pulled through. After ten days of not eating, her first request was “Chick-fil-a. In my mouth!” After this incident Jolene was put on medications to prevent future “asthma-like” reactions to colds and has since been doing great.
We are blessed to be able to go to a CDH clinic twice a year where a team of nurses and doctors work together and do a lot of research to know how to better treat CDH kids. We are so thankful that Dr. Matthew Harting and team are dedicated and willing to work with so many other researchers around the world and we know that should something ever happen in the future, we are in good hands. (Even though we now live 8 hours away, we know they are there for us when we need them!)
Our Jolene continues to be our feisty child, and keeps up with her older brother and sister (and gives them a run for their money!). She loves music, dancing, reading, playing with her dogs, riding her bike and jumping on the trampoline. Jolene cares for others so passionately and we know that she will go on to do great things!
We also kept a blog during the NICU days to keep track of everything: http://littlejellybeanlachance.blogspot.com/“