The Swartz Family

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

Update 8/1/24

We learned that we were pregnant in October 2023 with great excitement and some anxiety. We have two kids at home (5 & 3) but were coming off of losing our daughter Lily earlier in March 2023 at 28 weeks pregnant. Because of this, we started seeing a high risk doctor for this pregnancy and learned on the 16 week anatomy scan that our new daughter had CDH. It was an absolute shock and terrifying to learn about what our daughter would be facing. As we researched more about CDH and talked to several hospitals, we decided that we would relocate our family from Atlanta, GA to St. Petersburg, FL to be with Dr. Kays and his team for Clara’s birth. 

Our plan was to move the family down to Florida at 33 weeks pregnant, but a few days before our move date, Tori went into early labor while in Atlanta. We stayed at the hospital overnight but learned in the morning that she had progressed slightly in her labor. We prayed about it and made the decision to sign out of the hospital in Atlanta and drive 7 hours straight to St. Pete. It was a very stressful drive, but with a whole community praying with us on the drive, labor stalled and we made it (in record time!). Labor completely stalled and we ended up staying in St. Pete for 6 more days before Clara was born. 

About an hour after she was born, the doctor came in and told us that they learned she has a very severe condition called a Type 4 Laryngeal Cleft in addition to her CDH. There is no known record of a child surviving the combination of a Type 4 cleft & CDH together, but this hospital happens to have 2 doctors that separately specialize in each of these conditions and were willing to try. It was a kind gift from God to allow us to be here for Clara’s birth. 

We are currently 2 months into our stay here and Clara is doing remarkably well! Every doctor & surgeon has told us she has far exceeded all expectations. They anticipate we will be here for another 4 months or so, and this grant is incredibly helpful in helping maintain our home/mortgage back home as well as all of the expenses of living as a family of 5 here in Florida. 

Update 8/27/24

Clara has had a really busy month! She spent most of the month switching between different sizes and variations of CPAP, mostly via the nose mask, but ended the month being reintubated. Our goal for the month of August was to see if she could wean down on her ventilation settings to hopefully avoid further surgical intervention, but near the end of the month it became clear to all that she would need further intervention to help her proceed. She was reintubated and scheduled for a Tracheopexy surgery on August 26th to stent open her airway, as she has pretty bad tracheomalacia (a floppy airway that collapses when she gets agitated). The surgery was long (8 hours), and so far has seemed successful! She also had her esophagus removed (it was causing issues and previously disconnected due to her type 4 laryngeal cleft), which will eliminate reflux and the accompanying aspiration risk from it. The goal is when she is 1.5-2 years old to reconnect her esophagus using a portion of her small intestine (it is wild what they can do!) so that she can one day eat without a G tube.

In addition to this big surgery, she has had 4 different PICC lines (she pulled one out, 2 cracked, and then finally they placed a tunneled line), had her GJ tube replaced (she pulled it out), had the GJ tube removed later and replaced with just a G tube, met lots of friends and family, and turned 3 months old!

We are very proud of how strong she is and are very hopeful that the next month ahead is full of growth and progress towards breathing with less support. If she can progress from here, we can likely avoid further surgery during this stay. She is a few days away from hitting her 100 day NICU mark and we expect a few more months here, but there seems to be a light at the end of the tunnel.

Update 9/27/24

Clara turned 4 months old and we crossed 125 days in the NICU this past month. She spent most of the month being extubated, being reintubated, and then giving her a few days to recover before trying again. Each attempt we tried to change various variables to see what would be the most successful strategy, as this was her last chance to avoid a tracheostomy. Ultimately it became clear that she would need a tracheostomy, as her Bronchomalacia would collapse when she was upset and she just doesn’t have enough reserve in her lungs to push through (due to CDH). The tracheostomy will give her the constant pressure to keep her airway open, and give the support she needs while giving time for her body & lungs to grow. While we were quite disappointed that she ultimately needed this, we know it is clear that this is exactly what she needs and we are already seeing her start her stability improve. And it’s great to finally see her full face without a breathing tube taped in!

We will spend the next month working with her to ween down on vent settings to a level that we can go home on, and likely start the discussion about eventually discharging.