Collins, Sarah Violet

Our journey, this place that fate, or rather the hand of God, had brought us to begin on March 21. We learned that we were expecting our first child, an unplanned but unprevented surprise. We felt fortunate to receive this gift so easily as many of our friends were having difficulty conceiving, and outside of a scare at six weeks, assumed that this pregnancy would progress without event as most seem to.

That notion was interrupted when, at 14 weeks, a day of right-sided abdominal pain brought me to the Emergency Room, leading to surgery to remove my appendix. Many times I quipped, "It can't get any more exciting than this!" That idea, however, was soon to be changed too. At 18 weeks, I had an ultrasound to check on the baby as a follow-up to the surgery. We learned that day that chances were good we were to begin decorating and choosing names for a girl! We were asked to return in 4 weeks to "find out for sure", and also because they had difficulty seeing some parts of the baby. In retrospect, it is with much naivety that we believed this to simply be routine. I understand now that they were simply sparing us 4 weeks of worry and fear in the face of uncertainty.

We eagerly returned at 22 weeks, in anticipation of getting a better look at our little gift. We learned that day that we were indeed expecting a girl; we then learned in few words that our little girl had a Congenital Diaphragmatic Hernia, meaning that she had many of her abdominal organs in her chest, pushing her heart to the right, and hampering her lung development. We were sent down to talk to our Midwife, who met us with a textbook, only able to give us that information as she had only dealt with this diagnosis once in her 20 years of practice. The technical terms explained that day meant little; what stood out however was a 50% survival rate.

I returned home that day to learn as much as I could, with the promise to my husband that I would not get swept up in the negative. We committed this right away to the Lord, believing that He would bless us, and heal our daughter in whatever way He chose. When we met with the Perinatolgist 2 days later, I had become an "expert" by way of the Internet. Twice that day, we were offered the "opportunity" to terminate the pregnancy. I told the Dr. that even if my baby had only a 50% chance, that chance was better than the chance she had if we aborted her, which seemed to go right over her head as she proceeded to tell us that we did not have much time to choose.

I was also learning to trust God and believe in Him for who He was. not based on my circumstances. Despite our highest aspirations and prayers of many others and ourselves we did not receive good news from the frequent ultrasounds. Our hopes were met with grim news that she seemed to have many organs in her chest.

Being a nurse and therefore understanding the need to be assertive, I continued learning about this birth defect, and soon found an out-of-state Dr. boasting a 92% survival rate. This was in comparison to the 65% survival rate at the local hospital we were referred to, as they had an ECMO (heart-lung bypass machine) available if needed. Survival rates for Congenital Diaphragmatic Hernia seem to be higher than what we were originally told, however do vary greatly from place to place. We began the push for insurance to cover a referral to meet with this Dr., with absolutely no support from my providers; I was treated as if I were crazy for even entertaining the idea to travel out-of-state for care, though to us, it was simply doing the best for our daughter and increasing her chances at a favorable outcome.

I was drained emotionally trying to make this situation work, and one night as I lay in bed, I felt that God was telling me I was pushing against a door that was not to open. And I felt the peace of God about this, which I could not understand. The very next morning, a Pediatrician I work with put me in touch with the best Pediatric Surgeon in our area, who gave me information on what they were doing with CDH at another hospital in our area. After speaking with him, I felt for the first time that she would really make it; that God's choice for healing would not be a heavenly one. We were never given this hospital as on option, simply because it is not covered by our insurance! At this facility, they were also doing better than 90%! Another Pediatrician at my clinic had a friend in OB who helped us with the referrals. Within 1 week, we had the approvals necessary from our insurance company. Now I understood God's plan, and realized He had a much broader view of our situation than we did; He knew where the best place would be for our daughter.

When I called to change my care over to the Perinatal group associated with this hospital, one of the Dr.'s called to discourage me from switching my care, and informed me that I would be forcing them to steal a case from their colleagues across town, at the other hospital. I told him simply that I was not concerned with the politics, and concerned obviously only with the care of my daughter and her chances for a good outcome. His tune quickly changed as he told me that they would look forward to accepting my case, and I was set up for a visit the next week.

Two weeks after my change of care, I went into pre-term labor, at 33 weeks. Remember, things cannot get any more exciting? This led to an admission to the hospital on bed rest and IV Magnesium Sulfate to stop contractions, as it is very important with this type of birth defect to "keep them in the oven" as long as possible. I was on bed rest for 4 weeks, and on November 10, despite our efforts, Sarah decided to make her grand entrance, only 3 weeks early and officially full-term. I had feared throughout the pregnancy that when the time came to push her out into this world, that I would not be able to. As long as she was in me, I was her life line; taking her from their meant forcing her into a world where she did not have enough lung to function. But when the time came, God again gave me peace. I knew I was in the right place, according to His plan. As I was nearing the end of labor, surrounded by about 15 professionals ready to care for Sarah, the song "Angels Among Us" came on the radio in the delivery room, and I knew that God had hand-picked these people to care for our little miracle.

There was no cry when she entered the world, as I had hoped there would be, and she was held up for me to see a brief moment before they went to work on her. That time was an eternity; I prayed fervently that God would breathe his breath of life into her little body. When she was stabilized, she was wheeled past me in the incubator on her way to the NICU. My husband was able to see her shortly after, and returned with news that they were pleased with how well she was doing. A couple of hours after that, I was able to go see her. I was prepared for the worst, uncertain how I would react to seeing her hooked up to all of the machines. But when I saw her, all I saw was my Sarah, her determination, and God's strength keeping her alive.

Sarah did very well her first few days in the NICU, despite being put on the high-frequency ventilator for a few days. She was on Nitric Oxide to help with her Pulmonary Hypoplasia and Pulmonary Hypertension, two conditions that are pretty much a given with CDH. Sarah had surgery at 1 week of age to repair her defect, during which they removed her stomach, spleen, small intestines, much of her large intestines, and part of her liver from her chest cavity and put them back into her abdomen where they belonged. Sarah again required the high-frequency ventilator following surgery. She never did require ECMO, and I knew that as long as this was not mentioned to us, she was doing well.

I will never forget the morning a week or so after surgery when I came to find that her nurse Sue had put a little purple bow in her hair; this is one of the greatest gifts ever given to me. I knew that if my daughter was worth "dressing up", that she was going to make it. It was around this time, to my surprise that I got to hold Sarah for the first time. It was one of those questions that I never asked, because I didn't want to hear that it would be much longer than I could handle. and to my delight it was a lot sooner than I expected it would be! We would always hear from the nurses that "Sarah has an opinion". and I knew that this personality God had given her was getting her through. I also told her that we would have to work that out when she came home! Sarah continued to do better than expected and at 1 month of age was taken off of the ventilator and able to breathe on her own with the help of a small amount of Oxygen. The IV's and wires attached to her slowly disappeared. When she was just shy of 2 months, we were surprised one day to learn that we would shortly be taking her home!

Sarah is now 5 months old, and doing wonderful developmentally. She is now able to breathe well enough that she does not require Oxygen. Due to an oral aversion, Sarah has difficulties breastfeeding and taking the bottle, and receives most of her nutrition through a G-tube. Like many of the CDH families, we are constantly at battle with reflux. These small issues, though they teach us much patience, are very little compared to what we could be missing out on if we chose not to give her the chance at life that God ordained. There is not a day that goes by that it does not hit me that we are so lucky she is here. God has taught us many things on this journey, about our daughter, ourselves and most importantly about Him. There have been many hard times, many fears, and I know that these may continue. Someone said that courage is not the absence of fear, but the ability to go forth despite those fears. This is what God has given us. My heart melts at the beauty of the smiles glowing from Sarah's face, yet I know it is only a glimpse of the beauty God has shown us on this journey. We have been allowed to meet some wonderful people who are every day heroes. from other parents of CDH children who have also gone forth in courage to the NICU nurses who are truly God's angels here on earth. We have been challenged at every moment to grow and rely on God. This is a place you hope to never find yourself, but if you do, God will meet you there.

Update 2006:

Sarah is now three years old! She is a very active toddler, and you would never guess what she has been through by looking at her! She is still tube-fed a small amount at night to catch up her calories and weight gain, as she has recently decided she actually enjoys eating. This has of course taken much longer than initially thought, but history has shown Sarah has her own plans!

Written by Sarah’s mom, Dawn Collins (MN, USA)
2004, updated 2006