Brighton Emmaline Hiscox Wade
January 8 - February 11, 2022

This is an abbreviated story - we will be expanding on these moments over time. But, we know we haven’t shared this with all of you and want to share her story.

Last June, we were blessed to learn that we would be having a baby due in January. It wasn’t quite time to announce it to the world yet, but we were so excited to have our mothers with us as we found out we were having a daughter, and naturally went straight to the mall and bought a few dresses and within a few weeks were were talking about names and debating how we wanted to get ready for our little girl.

In August, barely past the first trimester, at a routine ultrasound, the sonographer got quiet and was taking longer than normal. Our doctor was making calls to get us in right away with a Maternal Fetal Medicine specialist. In less than 24 hours, we learned our baby had Congenital Diaphragmatic Hernia (typically just called “CDH”), meaning her diaphragm was not fully developed and abdominal organs like the stomach and intestines had moved into the chest, blocking the growth of her lungs. It’s a condition that affects about 1 in 3,000 babies, similar to conditions such as Cystic Fibrosis but is far less well-known. If you google CDH, you get the first scary statistic that 50% of babies survive. But, with good medical care, survival odds are typically as much as 85%, and quality-of-life prognosis tends to be optimistic.

Naturally, we spent the next few days processing and researching. They don’t know why this happens. It’s random. There are even instances of one in a set of identical twins having it (gold standard of medical A/B testing). We took every genetic test out there but everything came up clean. Besides having this life threatening condition, she was perfectly healthy. We had barely even started telling friends and family that we’d be having a baby, and now the news came with a huge asterisk. What we knew instantly was that we needed to find the best care possible for our baby, and it became clear fairly quickly that that probably meant consulting at numerous hospitals all over the country. We also discovered the sometimes-helpful and sometimes-maddening world of Facebook support groups, which we can discuss some other time.

Over the next two months, we consulted hospitals in San Francisco, Philadelphia, Houston, Seattle, St. Petersburg FL, and Los Angeles. Treating CDH is not simple. And evaluating programs as corporate non-medical types was tough. To paint a little bit of a picture of everything going on…

Flights and last minute travel and so much support from our family and work family for holding us up.
Ultrasounds, echocardiograms, MRIs, over and over, and over. And everyone is looking for something else to be wrong.
And what type of hospital? Babies need immediate attention after birth to support their lung function. And immediate means immediate — no holding, no baby on the chest, nothing. Anything else puts them at huge risk. So nowhere with a transfer - so a major children’s hospital at a research institution.
What about the surgeons who will repair the hernia? What’s their approach - gortex, muscle flap, laproscopic, incision, silos? How much experience do they have?
And what about the Neonatology team? They’re managing the baby’s care for months in the NICU as they recover from surgery and eventually catch up developmentally without aid of a ventilator. And what about the bedside nursing teams?
Oh wait, there’s risky in-utero surgery called FETO where they inflate a tiny balloon and put it in your babies mouth. But only some hospitals do it and you need to qualify.
And less important but still important, the MFM who delivers the baby, do they induce, c-sections? And where will you live? What about the city and proximity to family and friends? Do you like your social workers? It goes on and on.

This wasn’t just about finding just a good surgeon, or just a well-rated hospital with a level-4 NICU. We considered many great options, but after our travels it was clear we felt most comfortable having our baby in the Special Delivery Unit at Children’s Hospital of Philadelphia (affectionately referred to as “CHOP”).

We packed up everything in our Santa Monica apartment, hugged our dogs Holly and Chubby goodbye and relocated to Philadelphia in early December, moving into the Ronald McDonald House on Chestnut Street, just next to the University of Pennsylvania and about a mile from CHOP. Over the ensuing month we attended our usual appointments at the hospital, resumed discussing baby names, and generally just spent the holidays building our anticipation for the baby to come.

We packed everything up and left for CHOP on the evening of January 5. Because the hospital wanted to have some control over the delivery in order to get baby immediate medical attention after birth, inducing labor was a necessity. So, we went in that night and the waiting game began. Despite continuously increasing medication to induce labor, the baby seemed perfectly happy where she was. After two full days of waiting, the OB finally came in and broke Kari’s water to get things moving.

On Saturday, January 8th at 1:09pm, Kari gave birth to a beautiful baby girl weighing 6 pounds and 13 ounces and referred to as “Baby Girl Hiscox” as we had not yet decided on her name. The doctor held her up for just a moment, time for the cord to be cut and for her to make a gargling noise for us. After that she was rushed into a stabilization room adjacent to the delivery room where she was intubated and stabilized over the next two hours, after which she was brought in to see us for just a moment and then taken to the NICU.

After about 6 hours, we started to get notified that the baby was likely to need to be placed on ECMO. Just that fact was enough to know this was not going to be a typical CDH course - ECMO is effectively a version of life support and while it is not unusual for CDH patients, it is reserved for only the more severe cases. Nevertheless, we always knew that was a possibility and were relieved to learn that the procedure to get her onto ECMO (which is a significant surgery) was successful. Unfortunately, not even 2 hours later, the surgeon was back in our room telling us the baby had unusual fluid buildup around her heart and would require exploratory surgery immediately and that she was in critical condition. The suspicion was that she may have a perforated heart and her life might be in danger.

After a tense couple hours, the chief of cardiac surgery at CHOP called us to let us know that they did not find anything wrong with her heart, though they remained a bit confused about the fluid buildup. We were relieved in the moment, especially as over the next 24 hours the doctors all said that she’d returned to being “cautiously stable.” Obviously her challenges were already numerous at this point, but after an intense first 24 hours, she had begun to settle into her treatment and we could start thinking about a future. We hadn’t even given her a name yet!

We gave our baby girl the name Brighton Emmaline Hiscox Wade on Monday January 10th. It just became clear after spending a couple of days with her that her name was Brighton (also, we started with a list of about 100 names and worked our way down). We went downstairs to the NICU, wrote her name on her whiteboard, told all of our nurses and prepared for what we expected to be a multi-month stay in the NICU.

The first week in the NICU was mostly an educational process. Meeting the nurses and larger medical staff, attending rounds, and simply trying to understand what our day-to-day might look like. We were warned about burnount for parents in the NICU so we attempted to take that to heart and make sure we balanced our time. Meanwhile, Kari had just given birth and rightfully needed time to recover.

Unfortunately, Kari would not get a whole lot of time to recover before she found herself back in her own hospital bed. We will walk through that story separately, but Kari spent most of Brighton’s second week of life next door at the Hospital of the University of Pennsylvania recovering from a major hemorrhage (technical term: Vessel Subinvolution of the Placental Implantation Site), which left her with a dangerously low blood count and in need of numerous blood transfusions and regular supervision. We were fortunate that it happened while we were at CHOP visiting Brighton and that she was surrounded by medical personnel, notably a nurse that quickly and clearly identified what was going on and mobilized a team, and ultimately Kari was able to physically recover.

Over the coming weeks, we spent countless hours by Brighton’s side in the NICU reading to her, getting to know her bedside staff, trying to take occasional small excursions out into Philadelphia (mostly for sandwiches at Middle Child), but were also starting to get anxious about her progress. Babies with CDH typically have their repair surgery within the first week or two of life, and it is not typical for them to remain on ECMO beyond a couple of weeks. We became hyper-focused on her chest x-rays, which were not showing any open lung. Brighton was stable as long as she was on ECMO, but still very sick. And, unfortunately, ECMO is not something people can last on forever.

Because ECMO involves pumping and oxygenating your blood completely through a machine, complications and impurities are inevitable. For Brighton, that meant that we began to see small blood clots get stuck in her outer extremities, causing stress on her fingers and toes which began to look discolored from poor blood flow. The doctors were focused on getting her lungs to open up, and really could not do much about issues with her digits while she remained on ECMO. The prevailing priority was to determine if she could come off of ECMO. After expanding her set of machines to include dialysis to manage some fluid imbalances (at this point she also now was under the supervision of 3 full-time nurses), they began to see progress with her lungs opening up on her x-rays, which meant that it was time to try and get her off of ECMO and move onto her CDH repair surgery.

Surgeons dramatically prefer to wait until babies can be taken off of ECMO to do surgery, as their blood is so thinned-out that it causes an immense amount of bleeding risk. So, over the course of a few days, they attempted twice to run Brighton’s ECMO support down very low to see how she responded, tweaking her pulmonary hypertension medication each time to see if it would help. Unfortunately, she just wasn’t ready to come off of ECMO. This meant they needed to do her repair while still on ECMO, as the assumption at this point was that without repairing the initial CDH and moving her organs back into place that she might never be able to come off of ECMO. Not necessarily what we wanted to hear, but, as with many other things, we knew this might happen. Repair surgeries on ECMO, while not ideal, are still relatively common for CDH patients that require this kind of support in the first place.

As Brighton’s surgery approached, it became clear we were hitting a major inflection point. We knew we had a great team and a world-class surgeon working on her, but she was already quite clearly on the severe end of the CDH spectrum. The picture of “success” was starting to become blurry, and even if she survived surgery and many more months in the hospital, the side effects and toll on her body just on the exterior was evident. They assured us she was not in pain, but as parents we were in so much pain knowing what Brighton was experiencing, and could potentially experience for years to come. At this point until Brighton’s passing about 9 days later, we barely left the hospital.

Brighton’s surgery took place on Thursday, February 3rd. We weren’t able to remain by her side since it needed to be sterile, but were just down the hall in a small room. After a couple of hours, we were visited by the surgeon and neonatologist who told us the surgery went “as well as it could have,” but that Brighton was bleeding “everywhere,” and getting her to stop was a challenge. They told us the next 24-48 hours would be tenuous and that she was not stable. Surgery is hard on anyone, but this was a four-week old baby that was already very sick.

We hoped and prayed for the best. By this point our mothers had come back to town and the hospital allowed them to come into the NICU to spend time with Brighton. We were just barely holding it together and it seems certain that this will go down as the hardest and worst couple weeks of our lives. We continued to spend as much time as possible with Brighton, reading to her, holding her hand, touching her head, dressing her up with bows and just being with her. But each day just gave us a new problem. He lungs had closed back up in response to the surgery (which was expected initially) and were slow to reopen. Her coloring was off. The doctors started noticing perforation in her bowels. Even IVs were giving her issues. Things were just getting worse before they were getting better, and it seemed like we were getting quite a bit more attention in general from our doctors.

On Tuesday, February 8, we had a “family meeting” scheduled with the full multidisciplinary team - surgery, neonatology, cardiology, psychology, social work, nursing… you name it. We expected it to be a presentation explaining Brighton’s go-forward course of treatment. Instead, it was essentially the two of us in front of about 15 people as the doctors confirmed with us that Brighton was likely not going to make it. The surgery had revealed a more severe issue in her chest than had previously been detectable, and that her lungs just did not have the vascular support to survive off of ECMO. They were going to see over the next couple of days what her progress was like and if they could once again test her on less ECMO support, but her chances were low and we should strongly consider bringing our families into town.

Brighton passed away the evening of February 11, 2022 in Kari’s arms, surrounded by her grandparents Alan & Elaine Wade and Dwight & Judy Hiscox, her uncle Bryan Hiscox and her aunt Diana Wade. She fought so hard over her five weeks and we are incredibly proud of what she endured. She is a hero and a treasure in our eyes. We’re so thankful for the time we have had with her and she has changed our lives forever.

We frankly didn’t even know how to leave the hospital after she had passed. We stayed with her until early in the morning and then slept at the hospital. Leaving in the morning we said goodbye to so many of the doctors and nurses that had fought so hard for her and truly are a part of her family. Even today it remains quite surreal that we’re not still in the NICU with her watching her vitals, chatting up the staff and just waiting for her to get better so we can go home.

There is so much more to Brighton’s story, and we’ll certainly be telling it here and hope to share it with all of you over time. It’s been heartbreaking every time we’ve had to let each of you know what’s happened, but Brighton is a part of all of our lives and we want all of you to know her like we have, which is as a wonderful girl full of life and personality and with so much to give to all of us.