We found out at our 20 week ultrasound – which was also our three year wedding anniversary – that we were having a girl. We were very excited. At the appointment the ultrasound technician told us that we needed to come back the following week for another ultrasound, as she wasn’t able to get all the pictures she needed due to the baby’s position. We scheduled an appointment for the following week thinking nothing of it. It was then that we found out there was something wrong with Sadie’s heart – they could see a hole between her ventricles and an overriding aorta. We were told that we needed to follow up with a pediatric cardiologist, who would be able to diagnose her condition.  A week later, Sadie was diagnosed with the congenital heart defect (CHD) tetralogy of Fallot (TOF). After the initial shock and a difficult period of time spent ruling out other associated disorders, we came to learn more about Sadie’s condition and felt good about the extremely positive prognosis that was communicated to us by her doctors at Lurie Children's Hospital in Chicago. It would be a rough first six months, as Sadie would have to have two heart surgeries, but Sadie's doctors were certain that once past this period she would be a normal kid with little to no limitation. Her doctors at Lurie Children's Hospital maintained this prognosis and outlook even after Sadie's last echocardiogram revealed additional complications (including the discovery that Sadie now had pulmonary atresia) and anomalies. Sadie's doctors confidently laid out the plan for her care and, based on their confidence and optimism, we remained positive while we eagerly awaited the birth of our daughter.

 

Sadie Elizabeth Schuster was born at 5:45 a.m. on Friday, November 14, 2014 in Chicago, Illinois. Born at 39 weeks, she was 6 pounds 9 ounces, 18.9 inches long and had red hair. She was beautiful. Immediately after Sadie was born, she was taken across the room by the NICU staff to make sure she was doing well. Sadie was checked and was allowed to come back to her mother's arms. We had an instant connection to our little girl and she seemed to know this. She stared at her mother intently for those short minutes she was allowed to be with us prior to being taken up to the NICU. Sadie was then taken across the bridge to Lurie Children's Hospital where she was admitted to the Cardiac Care Unit (CCU). After a few hours, we were able to go to her room and spend some real time with her. Sadie was hooked up to a series of monitors, oxygen and a medication that would keep her blood flowing from her heart to her lungs until her first surgery. Although it was not how we originally imagined it, we were so happy that first night meeting our Sadie and watching over her.

 

Over the next few days, we fell more in love with her and learned more about living with a child with a CHD.  We knew that it would be a struggle for the first few months between her temporary and full repair surgeries, but were confident we would get through it. The medical team assured us that Sadie was doing great. She was eating so much that we started calling her Ms. Piggy. We spent almost every waking hour with her, arriving early each morning and staying until late at night. Although we would have much rather had her home not attached to all those IVs and monitors, spending time with her in the hospital was a joy for us both. She became more and more alert each day and we loved watching her begin to explore the world. Sadie became quite popular with the CCU staff. The nurses loved to cuddle with her when we were not there.

 

Sadie’s first surgery was scheduled for Thursday, November 20th, a week after she was born. The day before surgery, Sadie's doctors informed us that, due to her anatomy, she would be having a different surgery than the one that was discussed with us for the previous four months. She would be having a central shunt, or a tube, put in between her aorta and pulmonary artery, which would create a pathway for blood to travel to the lungs to receive oxygen. The central shunt would then be removed during the full repair, at which time the hole between her ventricles would be patched and her pulmonary valve opened. We were nervous about the surgery, especially since it had only been introduced to us the day before with little explanation other than it was a surgery with which the hospital had been having recent success.

 

The day of the surgery arrived and we got to the hospital especially early to make sure we could spend as much time as possible with her prior to surgery. The nurses took her to the OR a bit before noon and we went into the great room at the CCU to wait. We received updates throughout the surgery and then after about six hours, we were told that the surgery was successful. We were beyond relieved and could not wait to see our brave baby girl. When we were allowed back in Sadie’s room to see her, it was quite a shock for both of us. She was temporarily paralyzed, bloated from the medication, was on a ventilator, and was hooked up to what seemed like 100 different monitors, machines and IV tubes. Although she looked worse on the outside, we knew she was better on the inside and we were grateful she was through the surgery. Her mother did not leave her side and spent the next couple nights with Sadie in the hospital.

 

The day after her surgery was the most difficult as Sadie became less sedated and more uncomfortable with all the tubes and IVs. We were told that she started to recover quickly, and it was amazing how fast she came off all those medications and how quickly most of the tubes, IVs and monitors were removed. Sadie was especially determined to get that breathing tube out, and began pulling on it constantly until it was removed. The doctors were impressed that she was removed from the ventilator and breathing on her own by the morning of November 22nd, only two days after surgery. The nurses started referring to her as a “rock star” for how quickly she was recovering. On Wednesday, November 26th, the day before Thanksgiving and only six days after her surgery, Sadie was discharged to come home for the first time. 

 

That day will always be one of the greatest days of our lives, as it was the first time we got to hold both of our children at the same time. Sadie got to meet her big brother Elliot, who wanted to hold, hug and give kisses to "baby sister Sadie." We were so happy and felt our family was complete. The next few days were exhausting, but full of happiness for our family. We especially enjoyed holding Sadie without her attached to a million cords and tubes!

 

On the evening of Tuesday, December 2nd, Sadie began to look a little blue, so we took her to the ER at Lurie Children's Hospital to be checked out. The doctors confirmed that we had made the right call in bringing her in, and that she would need to be monitored to determine what was causing her worsened condition, which included worsened tricuspid regurgitation, atelectasis, high blood pressure and low oxygen saturation levels. Sadie was put on blood pressure medication and given oxygen, which her doctors felt adequately put her back on course. Although the cause of her worsened condition was not determined, Sadie was discharged to come home again that Friday. We were worried because she was sent home with a pulse oximeter and oxygen, both of which we had been consistently reassured by her doctors over the previous four months that she would never need at home. We were becoming increasingly nervous about Sadie's condition, but were happy to have her home again and continued to trust Sadie's doctors, who maintained that she was doing fine. We trusted that her medical team would never send her home if she was in danger and had been repeatedly assured that home management of her condition did not include sudden or emergency situations. 

 

In the early hours of Sunday, December 7th, 36 hours after coming home from the hospital the second time, Sadie stopped breathing. We gave her CPR. We tried to save her, as did the EMS team and the ER doctors and nurses at the nearby hospital, but no one could. Even though Sadie's heart/lung autopsy (performed by a specialist) revealed that she died from complications due to her heart defects, her doctors at Lurie Children's Hospital told us that in their opinion her heart was fine and that it's not possible that her death was caused by her heart defects. The autopsy did not reveal any other likely causes of death.

 

We miss our little Pea and know that we will carry this grief with us for the rest of our lives. Sadie endured more than most in her short life, and she did it with such grace. Whenever she cried, she just wanted to be bundled, cuddled or fed. When she looked up at you with those big, gentle eyes, it would melt your heart. There is nothing we would trade for the time we spent with her, and nothing we wouldn’t give to hold her just once more. We will always remember her and never forget the joy we felt with her. She is our beautiful baby girl and she will always be.