Jaxon Milburn’s Story
December 17, 2018 is a day that forever changed our lives. We woke up extra early that day because we were going to see our growing, healthy baby boy on ultrasound. We already knew that he was a boy because we did a blood test screening when I was 10 weeks along. During that screening, not only did we find out we were having a baby boy, but we also were told that he was a healthy baby boy! No genetic abnormalities had come back on my blood screening. Little did we know, the results we were originally told were not an accurate depiction of Jaxon’s actual health. While we arrived that day with optimism and joy, we walked out of that doctor’s office feeling scared, sad and confused.
We did not expect to hear anything that would be life changing, but we did.
The lady who performed the ultrasound had a bit of a concerned look on her face. We asked if everything was okay, to which she replied, “I just take the images, but the doctor will be around shortly to discuss the results with you all.” At that moment, we had a gut feeling we were about to receive life-altering news. The exam finished up and we were sent to the waiting room. I knew in my gut that something was wrong because in my past two pregnancies I was taken to an exam room where a nurse would come in to take my vitals and take a urine sample and a doctor would come in shortly after to speak with me and take a listen to the baby's heart. This was very different. Instead, we were sent to the waiting room where we were told that the doctor would come out to get us to bring us into his office to go over the results.
We sat in the waiting room for about 15 minutes before we were called into the doctor's private office. Dr. Leonard sat me down and began to let me know that there were some abnormalities noted on the anatomy scan. The biggest thing he noticed was the shift in the heart all the way to the right side which he referred to as dextrocardia. He told me he did not specialize in high risk pregnancies or birth defects so we would need to see a maternal fetal medicine specialist for further evaluation. He advised my husband and I to go home and relax, stay off google and just wait for our appointment. He told us to try our best not to worry until we met with the high-risk specialist. We left his office and a few hours later Maternal Fetal Medicine contacted us to set up an appointment. We scheduled it for Friday, December 22 just a few days before Christmas.
Friday came around and by then we were feeling anxious and scared. We sat in the waiting room quiet but praying when we met with the doctor that we would be reassured that everything was going to be okay. There were so many people in the waiting room that day, many coming and going from the office. I couldn’t help but notice the differences in people’s demeanor as they were leaving their appointments. Some looked happy, some looked nervous, some unsure. It gave me mixed vibes about what we were soon about to face. My name was called to walk back to the exam room by the radiology technician. My husband Bryan and I followed her to the room. It was a two-part exam that was being done. The images took a long time. I noticed she kept going back to one specific area during the exam and it was the area of his heart.
She had me lay in different positions while capturing images and seemed a bit unsure of whether she was gathering enough images for the doctor to review. She finally finished up with getting all the images and told me to stay on the exam table and in my gown in case the provider would need to look herself. She told us to hang tight and the maternal fetal medicine specialist would be in with us shortly. About 10 minutes later, the specialist walked into the room and the very first thing she says to Bryan and I is, “Before we start this conversation, I need to know how you feel about termination.”
Stunned and taken aback at how the conversation started, we had a hard time processing anything that was said thereafter. She began to explain to us that Jaxon’s heart was on the far right side of his body and that he was diagnosed at that moment as having a “heart defect” with the possibility of it being a Congenital Diaphragmatic Hernia (CDH), which this specialist doctor had only seen one other time in 20 years. She told us this was a very complex medical condition that doesn’t have a very promising survival rate. She also told us that she believed she saw only one kidney during the exam and that it looked as if he didn’t have adequate blood flowing in his heart. She suspected this was a very severe case of CDH. Once again, she asked us what our thoughts were about termination and reminded us that due to the state laws in Virginia, we only had 10 days to decide what we wanted to do.
She then said she would leave the room to give us some privacy to talk and decide. Bryan and I told her that termination was not an option for us but we needed a few minutes to talk in private to gather some questions so we would be more prepared to talk. We both agreed during this time that no matter what, we would not end this pregnancy. We would do whatever we needed to do to give this baby a fighting chance. The specialist came back into the room and we began asking questions. The types of questions we asked were about survival rates through pregnancy, survival rates with this condition, and quality of life for our baby. At the end of the conversation, the doctor said that the cause and severity were unknown. She had seen in my medical chart that I did blood testing early on in my pregnancy to detect the likelihood of any genetic or chromosomal abnormalities and those results were normal, so she told us that this was likely due to environmental factors. I shared with her that I had pneumonia very early on in my pregnancy (around 7 weeks to be exact) and had to be hospitalized for it. She then began to look at my chart and said that the defect could have happened as a result of me having pneumonia and being on several harsh antibiotics to treat it. She recommended an amniocentesis to rule anything else out, but I declined it because it was already decided that no matter what, I was keeping my baby and nothing or no one would change that.
The specialist then told us that we could not deliver our baby at Winchester Medical Center. We would need to reach out to children’s hospitals in the area for more thorough scanning and diagnostic tests, but that due to the holiday timing it would be unlikely that we would get in prior to the deadline for termination in the event we change our minds. We never considered termination, but the feeling of being pressured to make such a life-altering decision with so many unknowns (severity, our son’s quality of life, whether he actually will live, our other children’s well-being, and many other considerations) in a 10 day notice was one of the most stressful times we’ve ever gone through as a couple. We sat down on the couch at home and talked about just how big of a task this could be and decided through faith alone to move forward with the pregnancy. The possibility of the condition being CDH motivated me to do an extremely thorough internet research session for me. Depending on the website and hospital we looked at, it looked like Jaxon had about a 40-50% chance of survival. Through diligent research I found that the two hospitals most known for their CDH research and care are John Hopkins All Children’s in St. Petersburg, Florida and Children’s Hospital of Philadelphia (CHOP). I joined a few CDH Facebook groups and sought out recommendations and the overwhelming majority of people highly recommended CHOP for the care of their child and for the simple reason that it was much closer to home for us. While we thought Jaxon was given a death sentence, the amazing people on these sites gave us a tremendous amount of hope. Shortly after doing this research, we set up a consultation day at CHOP to see what we signed up for by deciding to move forward with this pregnancy.
At our appointment on January 8, 2019, I went through several lengthy tests and scans. After being there for 8 hours of testing, we finally met with Dr. Johnson who went over our results with us. We sat there for 30 minutes with our stomach in knots while he drew out diagram after diagram of a normal baby’s anatomy vs. a baby with CDH. He finally began to explain our son’s condition and the findings from our MRI, 3-hour anatomy scan and echocardiogram. He told us the total lung volume from the MRI showed good numbers for the baby’s gestational age and showed that the baby did in fact have lung function on both sides, which they don’t always see with CDH babies.
The MRI/ultrasound also confirmed that our baby’s liver was down with just the tip of it up, which was optimal. The liver has a lot to do with the severity of these cases and if it is up, the outcomes and survival rates are different. Then came the news about our son’s heart. Our local MFM doctor told us the baby had an undetermined heart defect along with CDH, and only one kidney that they found to be “echogenic”. Dr. Johnson reassured us that what we were dealing with was isolated CDH. Our baby had a perfectly healthy heart which was just misplaced due to the CDH and had two working kidneys. Bryan and I felt such a sigh of relief after hearing those words. After meeting with Dr. Johnson, we met with Dr. Adzick who is the head surgeon of their CDH program at CHOP. Dr. Adzick did not give us unrealistic expectations, however, his truth gave our son a much more fighting chance at not only surviving but surviving and living a normal life. Dr. Adzick told us our son is one of the better cases of this they have seen and gave him about an 85-90% chance of survival.
On April 14, 2019, when I was 36 weeks pregnant, we relocated to the Ronald McDonald house in Camden, NJ where we stayed for close monitoring until Jaxon’s birth. We tried to “enjoy” being somewhere new as much as we could, going to the Philadelphia Zoo, the Camden Aquarium, and sight-seeing in Philadelphia. We tried to make a bad situation as good as possible for our other two children. The care and hospitality given at this facility was incredible and we are so thankful to have been allowed to stay there during this stressful time. Jaxon was born on April 29, 2019 at 10:05 AM. Right after he was born, they took him into the back room and resuscitated him, intubated him, and plugged him into many monitors and machines that we soon learned would be vital for his survival. About 1 hour after he was born, they rolled him into our room, let us look at him, take a few pictures, and then he was on his way to the NICU.
It was the strangest thing not to be able to hold your newborn baby, but we later learned that this was just day 1 of many of not being able to hold him. The first few days after birth were up and down. We did not know what to expect and looking back at it, it all seems like a big blur. We thought going into it, based on some experiences we read about online, that he would be born then repaired a day or two later. This could not have been further from the truth. He was originally on a gentle ventilator —the oscillator, with the goal of allowing the ventilator to do the breathing for him. Instead, our little fighter was still trying to breathe on his own, over the ventilator and his lungs were not getting the rest the medical team wanted. One of the most difficult things about this journey is leaving your child at night. The hospital recommends you leave to get rest when your baby is in the NICU.
On Saturday, May 4, we got the call we did not expect. The doctor called to get our consent to put Jaxon on Venous arterial (VA) ECMO. ECMO is essentially a machine that serves as 100% life support by cycling the blood for the baby and serves as a heart and lung bypass. It completely takes the ability to breathe off the baby and gives the lungs and heart time to rest. We knew going in that ECMO was only used for the most severe cases of CDH and, given his diagnosis, did not even consider that this could happen. We didn’t even talk about it at all prior to him being born with the medical team because they reassured us numerous times that he would not need to go on it based on his good numbers. The chance of survival for CDH babies on ECMO is far less than normal CDH babies, which put us into a panic. Why is this happening? How did this happen? We thought he was going to be fine!
We rushed over to the hospital and by the time we got there, Jaxon was already in surgery. We didn’t even get to tell our baby goodbye as he went into an extremely invasive and risky surgery that could end his life. After a grueling hour of waiting in the waiting room, the surgeon came out and told us the surgery was a success and that we could go back and see him. We later learned that Jaxon’s nurse, Angela, was our guardian angel that day and saved his life. She was by his side for her entire 12-hour shift and is the one who made the call to the doctor to have him put him on ECMO as he was going downhill fast due to cardiopulmonary failure. We thank God regularly for our guardian angel, Angela, who was with Jaxon her entire 12-hour shift both days she had him and did not leave his side. When Jaxon was put on ECMO, the discussions we had with the medical team led us to believe that he might be on this machine for a week at most. These machines typically function optimally up to about two weeks and need changed out after that due to potential blood clotting. It is far and few between that any of these babies are on ECMO long enough to need a machine change. Like all other things in Jaxon’s journey, he was different. He always liked to keep his medical team on their toes by throwing them a bunch of curveballs. We were told he was one of the very few babies to go on several different ventilators but did the best on the one with the least support which was odd because of how sick he was.
He also had to have multiple blood transfusions, be on multiple sedation and pain medications, pulmonary hypertension medications, precedex, nitric oxide prostaglandins, diuretics, antibiotics and paralytics (vecronium). I’m probably forgetting some of the medications because he was on so many, but these were the main ones. He was quite a challenge and we all had such a hard time figuring him out, but we were warned from the start that no CDH baby is the same and they all respond differently to treatment.
Jaxon’s ECMO course lasted a total of 25 days. This was longer than most of the staff had ever seen but proved to be vital in where he is today. During those gruesome 25 days, Jaxon was blessed to have the most amazing nurses taking care of him - both on day shift and night shift.
On May 26, 2019 at 12:18 AM, I received a phone call from the charge nurse that Jaxon’s ECMO machine had developed a clot in the brain of the circuit. The charge nurse told me that due to this, he would need to be switched over to a new machine immediately. During the switch, he would be off all support which could go either way for him and due to how he handled his ECMO trials in the past, they were not sure if it would go well. I remember being a nervous wreck and called the first Uber to come get me from the Ronald McDonald house. I made it to the hospital in 5 minutes and by the time I got up the floor, he was already done with his switch over. He laid there peacefully as if nothing had even happened.
His vitals remained stable the entire time and it gave them a positive sign of hope that he may be able to come off ECMO indefinitely after that. Two days later, on May 28, 2019, Jaxon was successfully taken off ECMO. He did amazing and adjusted so well. After seeing how stable he had become and noting how perfect his blood gases were coming back, the medical team felt he was ready to have his diaphragmatic hernia repair surgery. They decided on Thursday May 30th for surgery pending nothing crazy happened prior. On May 30, 2019, Dr. Holly Hedrick performed his repair. The surgery took about an hour, which was much faster than we thought. Like the time waiting in the waiting room during the ECMO surgery – it felt like our stomach was in knots as we saw person after person come out of the NICU that wasn’t Dr. Hedrick. Finally, Dr. Hedrick came out with a smile on her face and told us the CDH repair surgerywas a success. She told us how long it took, and that she had to fuse a gortex patch to close the hole in his diaphragm. The hole was much larger than they anticipated. She informed us about the risks of having a patch and what to expect moving forward and the potential bumps in the road along the way. She was incredibly helpful and present in the moment to answer any and all questions we had . At the end of our conversation, she simply stated that the easy part was over, and the real challenge was about to start. We didn’t really know what that meant at the time, but looking back at it now, she was right!
Two days after his surgery, on June 1, 2019, Bryan and I got to hold our baby boy for the very first time. I will never forget this day for as long as I live! The 34 days we waited felt like an eternity! Holding my son after waiting so long brought about so many intense emotions that I cannot even begin to describe. After Jaxon had his repair, he began weaning off his sedation medications and respiratory support. He was extubated on June 13, 2019 and completely off all oxygen support on June 29, 2019! The next big hurdle Jax faced was feeding. He had been getting breast milk swabs while he was intubated and seemed to enjoy them so I was hopeful that feeding would go well.
The issue with CDH babies is most of them end up with severe reflux and must be on medication to control it. They also have issues gaining weight due to a combination of reflux as well as having to work harder to breathe due to having pulmonary hypoplasia (smaller lungs). In order to combat these issues head on, the medical staff recommends fortifying breast milk with formula for added calories and to control the symptoms of regurgitation and reflux. For Jaxon, he tolerated it somewhat but not entirely. In the grand scheme of things, feeding issues are what ended up keeping us in the hospital the longest.
On June 7, 2019, Jaxon began NG tube feeds in very small amounts. He started off with 5 mL every 90 mins and if he would tolerate that, they would plan to increase. It was a constant juggling act every day for months of increasing volume while decreasing the time he received it through his feeding pump so he kept it down and gained weight. Just as he would start to make progress, he would have one bad day of not keeping food down that pushed his potential discharge back date another week. We got to the point after many frustrating weeks where we asked the doctor to just try breast milk only as we had a suspicion that it was the formula upsetting his stomach and causing the vomiting. Thankfully, this is exactly what it was and within a couple of days, Jaxon was finally trending upward properly from a weight gain perspective and the doctor gave us the green light to head home!
On August 4, 2019, Jaxon was officially discharged and got to spend the night at his home 4 hours away in Charles Town, WV! The day we never thought would come finally came and we were overcome with so many emotions. We were happy, scared, nervous, but most of all grateful for him to have finally made it home.
One of our favorite quotes is “tough times don’t last, but tough people do” and the first few months at home definitely toughened us up. On November 2, 2019, Jaxon was officially NG tube free and was taking a bottle, breast feeding, and is still breast feeding today! Since Jaxon has been off the feeding tube, he’s been progressing as somewhat expected for a child who was bed ridden the first 3 months of his life (and cut open in two different places too.)
His routine now consists of meeting regularly with his physical therapist and feeding specialist from the WV Birth to Three program - both of whom have been very helpful in Jaxon’s progression since we’ve been home. He’s had some minor bumps in the road along the way such as having pneumonia and the flu in the fall, but he bounced back strongly.
The only eventful trip we have had to make back to Philadelphia was for a surgery to repair his ECMO site that had become infected. While this was nerve wracking to deal with due to the risks of being put under general anesthesia, the surgery took all of 30 minutes and he was repaired and on his way home within two hours! Since that surgery, he has progressed dramatically physically and now we can’t keep him contained in the living room! He continues to amaze us every day with how far he has come given where he started.
This past year has been a very long and stressful journey, but we can say with confidence it was worth it. Jaxon is the happiest baby we have ever seen and brings so much joy into our lives every single day. We talk regularly about that initial appointment with the doctor and cannot fathom the thought of what our lives would be like if we had gone through with the abortion. The national survival rate for CDH is around 50%, and we truly believe that prayer and surrounding Jaxon with positivity every day, along with the incredible team at CHOP, is what put him on the good side of that statistic. We chose faith over fear and were blessed with a strong, feisty little boy who is destined for greatness in this world.
- Sharelle Milburn, Jaxon's Mother