the cost and stopped feeling sorry for myself, the easier everything became. Almost immediately after signing with the agency, we found a match with someone who lived about an hour and a half away. We were excited because sometimes it can take several months, or the surrogate lives in a different state, requiring travel and more logistical planning. The agency facilitated the first phone call, and we later met her in person. She was perfect. I couldn’t believe how lucky I was.
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Surrogacy options
MIRACLE BABY Skye Ellison of Huntsville, Alabama, has been active in the pulmonary hypertension community since she was diagnosed at 11 years old. Her artwork was featured on the Pulmonary Hypertension Association’s holiday cards about 20 years ago. Today, she balances the demands of parenting with her career as program manager for a medical device company. By Skye Ellison
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will never forget the day when I found out my husband and I were going to have a baby. The fertility clinic called, and our surrogate’s pregnancy test had come back positive. After almost a lifetime of hearing, “You won’t be able to have children,” it felt like I had just achieved the impossible. I didn’t think I would ever experience such a magical feeling, until nine months later when I held my daughter in my arms. As most pulmonary hypertension (PH) patients know, pregnancy isn’t an option without taking on life-threatening risks. In spite of improvements in PH treatments, the mortality rate remains very high for both infant and mother during pregnancy. I was diagnosed with Group 1 pulmonary arterial hypertension (PAH) at 11 years old (I am 32 now). I had the standard symptoms, such as shortness of breath, chest pain and dizziness. This was a very scary time, especially for my family, as my original prognosis was not good. After seeing a specialist and undergoing several tests, including a right heart catheterization (RHC), I was given calcium channel blockers (CCB) as treatment. I consider myself
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PATHLIGHT // ISSUE 2
one of the very lucky patients who are long-term responders to CCBs. Seventeen years later, I got married and decided to start a family. I knew surrogacy was an option and wanted to start the process, but I had no idea what I was getting into. During my adolescence, my PH doctors had mentioned gestational surrogacy, where another woman carries the child in her womb. Starting the process After researching surrogacy agencies, we found one within driving distance. Generally, you don’t need an agency if you know someone willing to be a surrogate. But in our case, we needed the agency to match us with one. After a consultation that went very well, we anxiously signed on the dotted line and tried not to dwell on how much money we’d be spending. I had been saving for this since my first job at 16, preparing for it to cost about $100,000. It felt unfair to have to spend so much, especially when my peers made having kids look so easy. The sooner I accepted
After talking more with our agency and doing more research, I learned about many options for surrogacy. If you want your child to be biologically related to you and the father, you must undergo in-vitro fertilization (IVF) to harvest eggs, and the intended father must do a sperm collection. If IVF isn’t an option for you (it might not be for some PH patients), you can consider alternatives. One option is using a donor egg paired with the intended father’s sperm to create an embryo, then implanting it in a gestational surrogate. Alternatively, a traditional surrogate could be used, where the surrogate mother is also the biological mother of the child. Her egg is fertilized using sperm from the intended father. Adoption and foster parenting are other options to consider. These decisions are personal and not easy to make. I chose IVF and gestational surrogacy because I wanted a child that was biologically mine. However, there were times my husband and I looked at other options more closely when we ran into obstacles.
However, I was still considered too high risk to undergo IVF. I was surprised and discouraged. Despite several phone calls, emails and visits to my PH doctor, I couldn’t get clearance. The major risk seemed to be fluid retention as a side effect of increased estrogen levels, but I was not in heart failure. My doctors’ biggest concern was the lack of data on how IVF can affect patients with PH. No specific guidelines exist to assist doctors in determining who is too high risk for IVF with PH, and providers must rely on their clinical judgment, which usually means erring on the side of caution. It was disheartening to learn the same community that had encouraged surrogacy for most of my life was telling me they wouldn’t support me now that I was ready. Changing direction I started doing my own research. I closely assessed my specific case, including symptoms, medications, test results, lab results, etc. I couldn’t find a reason significant enough to stop pursuing IVF. I realized I needed to find a PH doctor who could help me. I did some digging online and found Rana Awdish, M.D., director of pulmonary hypertension at Henry Ford Hospital in Detroit, Michigan.
Consulting your medical team When I was ready to begin IVF, I set up a consultation with a fertility practice that was a part of the same health care organization as my PH specialist. The fertility specialists were concerned about how IVF would affect my health because of PH. I discussed those concerns in more detail with my PH doctor and followed the doctor’s recommendation to undergo an RHC to get an upto-date status on my heart function. I was so relieved: I had good cardiac output and no signs of heart failure. I thought I surely would be cleared for IVF treatments. PHASSOCIATION.ORG
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