Today marks 6 months since baby Leah was born. This week we also finally received her autopsy results from CHOP. The autopsy didn’t reveal anything much that the doctors didn’t already know - her right lung was underdeveloped, there was clotted blood in her chest cavity that wasn’t draining out after her diaphragm repair surgery, her liver was quite enlarged (2-4x the expected size, which they attributed to all the transfused blood her body was having to process), and evidence of mini-strokes could been seen in every layer of her brain. The doctor’s best explanation for Leah’s brain injuries and ultimate demise was that, between the unrepaired defect in her aorta and the underdevelopment of her lungs, her body just wasn’t able to pump enough oxygenated blood up to her brain. We can’t quite be sure if the brain injuries were accumulating slowly over time (even from the womb), or if they occurred when she came off ECMO, but either way, the doctors did everything they could with all their best techniques to work around her anatomy, and it just couldn’t be done.

To wrap up things on the Caring Bridge, someone suggested that I post Leah’s eulogy here, so I’m sharing it below. Even knowing the autopsy results, it all still rings true for me. I’m also sharing a few pictures from our last hour with Leah, where her sweet face can finally be seen without all her tubes. I look at her pictures often, and am so thankful for the many people who continue to remember her. Thank you for following Leah’s story and caring so well for our family!

Leah’s Eulogy

We wanted to take this opportunity to tell you all about how we’ve seen God at work in recent months. Throughout Leah’s story, there were times when things were confusingly difficult, but also times when things felt supernaturally easier than I expected.

We learned we were expecting Leah on May 11, and on my end, the pregnancy was my smoothest one yet, with very well controlled nausea and minimal aches and pains throughout the nine months. However, on September 12, we learned that Leah had a complex congenital heart defect that would require numerous surgeries in her infancy and childhood. This was initially difficult news, considering that my brother Tim had died of complications from his own childhood heart defect - however, we soon learned of several friends whose children had survived similar heart defects and surgeries, and these testimonies gave us some reassurance that Leah had a decent chance of surviving.

Unfortunately, at a follow-up ultrasound on November 1, the doctors discovered another and more serious defect - a large hole in the right side of Leah’s diaphragm, which was allowing her liver to occupy the space where her lungs should have been developing. We learned that the survival statistics were significantly lower for this kind of defect, especially in combination with a heart defect, and our initial reaction was to despair that Leah had almost no chance of surviving. However, the following morning, my daily Bible reading plan landed me in Isaiah 38, in which King Hezekiah learns that he is terminally ill, and then weeps and prays fervently to the Lord, and then is sent a message through the prophet Isaiah that the Lord has heard his prayers, seen his tears and will add 15 years to his life. At the time, I received this as an invitation to ask God to extend Leah’s life, instead of resigning myself to the certainty that her life would be very short. At the same time, I knew it was risky to stretch the meaning of a random Scripture passage too far, so I held open the possibility that the Lord could have intended me to glean some other meaning from Hezekiah’s story.

Julian and I both felt confused about how to best pray for Leah after we received this second diagnosis. We agreed that we really didn’t know what would be best for Leah, since the doctors had painted a pretty bleak picture of what her life could be like with her numerous health problems, including years on a feeding tube, ongoing airway issues and potential cognitive delays, to name a few. We felt that praying for God’s will to be done was the best thing we could do for Leah, instead of assuming that the best outcome for all of us would be for Leah to live a long and potentially very painful life. Sometimes I was able to just pray for God’s will to be done; but still, I cried out to God many times to spare us the sorrow of losing Leah, and asked Him why He had given me the Isaiah 38 passage if He didn’t plan to extend her life. I even embroidered some of my favorite verses from this passage on a blanket, because I wanted to keep meditating on them while also making something special for Leah.

Because we didn’t know how long we’d get to keep Leah, I decided it was important to make the most of the time I had with her. I tried to think of things I would do with my other children. Aside from embroidering special keepsakes for her, I tried to interact with Leah as much as I could using sound. While I was pregnant, I listened to the classical music station, because I noticed she tended to move around excitedly when classical music was playing. I found audiobooks of my favorite childhood series, the Little House Books, and I listened through several of them in my last trimester. After Leah was born, I read to her from my Bible, from the Little House books and from the kind notes people sent to us. Fiona and I regularly read a children’s book to Leah, and Julian read to her as well. Though we couldn’t hold Leah during most of her hospital stay, we enjoyed stroking her hair and holding her hand, and although I wasn’t able to breastfeed or bottlefeed her, the hospital allowed me to give her my breastmilk on cotton swab, which she seemed to enjoy at times. I also sang my favorite hymns to her. During the pregnancy, I became very attached to a hymn our friend Harrison had shared with us called “Whatever my God ordains is right”, and I sang it to Leah almost every day in the hospital - not only because I wanted to sing to her, but also because I wanted its message to really sink in as I pondered the question of God’s will for Leah. We’ll all have a chance to sing this song together in a few minutes.

Although there was much emotional toil during the latter part of my pregnancy, the physical process of Leah’s birth was by far the easiest I’ve experienced. This, too, felt like a supernatural gift from God – I went into labor 9 hours before my scheduled induction on January 14th, my labor and delivery only lasted 3 hours, and my labor pains were much much milder than they were with my other children. Leah’s first week in the hospital also went much more smoothly than I expected – her diaphragm surgery was performed on her second day of life, and although she required ECMO to support her heart and lung function, she initially handled it quite well with minimal complications. However, after that honeymoon of a first week, it seemed that everything that could go wrong did go wrong. Removing blood clots from Leah’s chest led to horrific bleeding, bruising and infection, instead of helping her lungs to open up. This delayed her removal from ECMO by close to two weeks. In the meantime, the ECMO seemed to be having worse and worse effects on Leah’s liver, which became quite distended while Leah became more and more jaundiced. And when her lungs were finally ready to come off ECMO, and we were so delighted that she had crossed one of her biggest milestones in treatment, everything went downhill so quickly with unexplained oxygen deprivation to her brain. While my faith in God had remained pretty steady throughout the ups and downs of Leah’s first few weeks at CHOP, this final blow was just too painful, and I really questioned God. “Another child in our family going into an unresponsive coma-like state, like my sister Emily did? God, don’t you care how traumatic this feels? And why did you allow us to get our hopes up about the most exciting milestone of her treatment if it was going to end like this? This just feels ironic and unfair.” Despite the devastation of this turn of events, God continued to show how He was with us and answering prayer by using Fiona and Stella to minister to us in those final days of Leah’s life. The girls regularly burst into song with Bible memory verses like “I can do all things through Christ who strengthens me” and “believe in the Lord Jesus Christ”. And when it came time for Leah to die, we all got to hold her and kiss her and enjoy a beautiful sweet time together as a family.

During my pregnancy and Leah’s hospital stay, one question that troubled me was – “if Leah doesn’t survive, what will all of this have been for? An entire nine months of pregnancy. Thousands of prayers. Heroic efforts by the NICU team at CHOP. Hundreds of thousands of dollars-worth of treatments. Painful surgeries and IVs and intubations that Leah had to endure. What will it all have been for?” I expect this question may continue to trouble me, but I also think I’ve been given some answers. As our friend Colleen said, God used Julian and me to create an eternal soul. That was for something. Leah was a real person who lived a real life and experienced real love. That was for something. God did extend her life – not 15 years like He did for King Hezekiah, but 28 days in which we got to enjoy our precious girl, thanks to medical technology that wouldn’t have even been available to us if Leah had been born 20 years ago. That was for something. During her hospital stay, we met wonderful people – doctors and nurses and fellow parents and children, whom we never would have met apart from this situation. That was for something. God taught us how to pray for His will to be done, and He taught me how to live as if today might be the only day I had to love somebody. That was for something. Through my children’s bravery and exuberant singing in the face of death, God showed us what it means that He wants us to be child-like. That was for something. And God showed us His love and closeness in tangible ways through all of you, and taught us what it means to “bear one another’s burdens and so fulfill the law of Christ”. That was for something.

My friend Sarah recently shared a Scripture verse with me from the Gospel of John, where Jesus tells His disciples “You do not understand what I am doing now, but later you will understand.” We don’t have to understand everything about what Jesus is doing today. Today, it is enough for me to know that Leah is in His arms, and there are no tubes in her mouth, or IVs in her arms and legs, or scars or bruises on her skin, or pain or brokenness in any part of her. She is singing to Him with the angels in perfect wholeness and glory, and I hope you’ll all join us in singing to Him with her.