Madisyn's Story

Madi's story began three years ago when we decided to start a family. After two years of trying with several infertility treatments, thanks to in-vitro we were pregnant. The pregnany was full of problems from the beginning as they gave a very high probability of miscarriage. Thankfully she fought hard to be here with us. At 18 weeks we went to a perinatologist for an ultrasound at which time they told us she possibly had heart problems, stomach problems, and an opening in her spine. That weekend our family and friends fasted and prayed for a miracle and the following week we got our miracle. We were sent to another perinatologist who found our little girl to be perfectly normal.

At 24 weeks the perinatologist found that she had a Congenital Diaphragmatic Hernia which is a hole in the diaphragm (the muscle that separates the chest cavity from the abdominal cavity and helps with respiratory function). As a result, part of her intestine and stomach were up in her chest inhibiting the developement of her left lung. We had many appointments to evaluate the growth of the baby and the size of the hernia so they could determine the best time for her to be delivered via c-section. We also had the task of selecting a hospital that would meet her needs and where we were comfortable with the surgeon. We decided upon Huntington Memorial Hospital in Pasadena which is about 45 minutes from Thousand Oaks.

On March 26, 2008 we welcomed Madisyn into our family. She weighed 5lbs 7oz. and was 17 ¾ inches long. She was a miracle from day one and continues to prove that. She was quickly intubated (placed on a ventilator) and paralyzed in the delivery room so that she wouldn’t swallow air or fight the ventilator. Following multiple tests and close monitoring Madi had stabilized and they decided it was time to repair the hernia. Madisyn had surgery three days after she was born. The hernia was much larger than they expected; she was missing 2/3 of her diaphragm, she had part of her stomach, liver, intestine, and spleen in her left chest which prevented her left lung from developing. As a result she relied solely on the right lung to support her little body. She did so well through the surgery and exceeded everyones expectations.

In addition to the hernia the doctors found on x-ray that Madisyn had some spinal abnormalities and rib deformities so a geneticist was called in to see if there was a syndrome to explain all her anomalies. After some testing they were unable to identify any genetic reason for her symptoms. Our little girl had just about every part of her body tested and thankfully everything else came out normal.

After the surgery they began to take her off the paralytics and sedatives to allow her to move and begin to do more of the work of breathing on her own. It was a very slow process but little by little she made improvements. When she was about 2 weeks old, she was finally stable enough for us to hold.

When she was 3 1/2 weeks old they took her off the ventilator and other than the assistance of a little oxygen she was able to breath on her own. Many of the doctors were impressed with how well she had done being that she only had one lung to support her little body.

Madisyn continued to improve but had one more hurdle to get through before she could come home. She had been fed via IV or feeding tube up to this point, now it was time to try the bottle. Eating seems like such a natural thing but for her it wasn’t. She did really good initially but then plateaued, she wasn’t eating enough to sustain her weight so they continued to have to feed her through the feeding tube. This was a frustrating time as we were so close to going home yet so far away. Steadily she was able to increase the amount that she was eating and they added extra calories to compensate for what volume she wasn’t able to eat.

After 7 weeks and 1 day of being in the hospital Madisyn was able to come home. We both cried when we put her in the car, we finally got to take our little girl home. We are so grateful to our Heavenly Father for blessing us with our little miracle and know that it is because of the prayers and faith of our loved ones along with priesthood blessings that she has done so well.

Madisyn is doing wonderful now that she is home. She continues to have frequent doctor appointments to follow up on her spinal issues, to monitor and see if she develops a functioning lung on the left side, to monitor her blood pressure, and to monitor her weight gain. She also goes to physical therapy to correct her torticollis (tightening of the neck muscles on one side).

She truely is our little miracle and our lives have been so richly blessed since she joined our family. We are grateful to all of our family and friends that stuck by us through this difficult time.