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The Hartfield Family

Baby Oliver

Scroll down to see updates as the Hartfield family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 4/1

During our 20 week anatomy scan we found out that there was something wrong with our little boy Oliver. They had finished our ultrasound and then the doctor come in to talk to us and take a deeper look. I knew at that point something was wrong. He told us that the left side of his heart looked small which could be hypoplastic left heart syndrome. Oliver was also measuring very small and they could not find his stomach via ultrasound. We were then referred to a maternal and fetal medicine doctor who then confirmed a handful of heart defects. We got into see a cardiologist the next day and she was the one that told us that it was a hernia near his lung that was the problem, not his heart. She didn’t mention CDH and she made it seem like it would be a quick fix after birth. They did also see a VSD, and possible coarctation of aorta. We were told his VSD would likely close and that a coarctation would likely be ruled out after birth. We left that appointment feeling hopeful and relieved. As I got home and read the reports from that cardiology appointment, I saw left sided CDH written down. I started doing research and soon discovered it was definitely not good news. I was sent for a fetal MRI that confirmed his CDH diagnosis and then met with the surgeon at our local children’s hospital. He told us that the typical survival rate for a child with CDH is 50%. However, with Oliver’s size being weeks behind in growth and having heart defects, that would lower his chances of survival greatly. He also had told me that CDH babies typically don’t make it past 25 weeks of pregnancy. Which was about exactly how far along I was at the time!

After such a devastating prognosis I started doing more research and joined CDH support groups on Facebook. I soon heard a lot about John’s hopkins all children’s hospital and Dr Kay’s. I started talking to another mother also from Arizona who had relocated to St. Pete. At first it seemed impossible financially, but so many people helped me learn how to make it work. Within a week my husband and I were scheduled to go out to Florida for more testing and to meet with Dr Kay’s. We were given a 90% chance of survival there and an 80% chance of needing ECMO. Our biggest fear was if Oliver would be big enough to be placed on ECMO. We had also discovered that my placenta was having resisted flow, which just added to the complications and risks for a still birth or early labor. 

My husband and I relocated to Florida when I was 34 weeks pregnant at the beginning of December. It was a hard time for us, being away from family, especially around Christmas. Oliver was born via c-section on 12/30/22. He ended up coming a few days early due to my placenta starting to show absent flow. He was born at 2 pounds 13 oz. We were terrified because we knew he was too small for ECMO. Thankfully, Oliver was stable on the ventilator and made it through his CDH repair without needing ECMO. It was truly a miracle! 

Currently Oliver is now 3 months old. He has already had 4 surgeries/procedures. When he was born we found out he also has esophageal atresia/tracheal fistula. We also discovered that his VSD and PDA were very large and that he did had a coarctation of his aorta. So far, Oliver has had his CDH repair surgery, surgery to do something called a spit fistula (short term solution for his esophageal atresia), a GJ tube placement, and a catheter procedure to look at his heart and lungs. We are currently waiting for oliver to have open heart surgery. The team will be discussing him this upcoming week to potentially talk about timing for his surgery. Due to his heart issues and other complication oliver has been unable to come off the ventilator. We are praying that his heart repairs will help him be able to come off the ventilator, which will get us one step closer to home. 

Update 4/19

Oliver most recently had a cardiac surgery on 4/14. He had a thoracotomy done to ligate his PDA and place a band around his pulmonary ateries to restrict too much blood flow to the lungs. He had a rough night after surgery and was coded, needing chest compressions. They found out his breathing tube was clogged with blood, so it was pulled and he was reintubated. We are currently doing much better and he is working on weaning vent settings. If he still is not able to be extubated, then he may need surgery for his tracheomalacia. Cardiology is now saying they would like to wait at least a year before doing open heart surgery to close his PDA and VSD’S. 

Update 5/28

Earlier this month Oliver was extubated for the first time. Unfortunately he was only extubated for about 24 hours until they had to put the breathing tube back in. He then had a surgery called a tracheopexy to help open his airway. We recently got up to extubation again and he was extubated for an about a week. Unfortunately they had to re intubate him again. We are unsure of what the next step is but I have requested a care conference with the team so we can figure out what the next move should be. We most definitely will have several more months here in the NICU as Ollie still needs several surgeries before being ready for home. 

Update 6/22

The team has decided that they will do his open heart surgery soon since he is still not able to come off the ventilator. We are currently waiting on a date for his open heart surgery to repair his vsd, pda, and coarctation of aorta. We are hoping this will be done within the next few weeks so we can work on getting him off the ventilator successfully!

Update 7/30

Oliver will be having open heart surgery on August 1st. We attempted extubation again a couple weeks ago but it did not go well. They may consider doing another airway surgery along with open heart surgery as well. We do not have an anticipated discharge date at this time as he still needs several more surgeries. Thank you!! 

Update 8/27

Oliver had open heart surgery on 8/1. It was a rough week after surgery since he got a blood infection. It took quite a toll on him. Since then, he has been recovering great though! On 8/22 Oliver was extubated to RAM cannula successfully for the first time! He is doing great and they are starting to wean CPAP. We are now working to figure out the best next step for Oliver when it comes to repairing his esophageal atresia. 

Update 10/2

So Oliver was actually discharged from the hospital on 9/18. He’s been doing pretty good but was readmitted Friday for some fevers. We are now just trying to get his blood pressure under control before discharging again. He’ll be back in Patient sometime in January for his esophageal atresia surgeries. We will not re apply since he should be getting out again soon. We really appreciate all the help this grant has given! You have made our lives a little easier during such a difficult time!

The Hartfield Family
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