My Miracle Baby

Skye Ellison of Huntsville, Alabama, shares how she and her husband became parents through surrogacy. Sky has been active in the pulmonary hypertension community since she was diagnosed at 11. 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.

MY MIRACLE BABY

By Skye Ellison

I 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 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 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.

Surrogacy options

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.

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.

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.

Although I lived in Alabama, I decided the travel would be worth finding a doctor who supported my long-term goals. I contacted her office, and she agreed to see me. She evaluated my case and determined IVF was doable for me, given my latest RHC results and history of clinical stability. Because my right ventricle wasn’t enlarged and worked well, as well as having low pulmonary vascular resistance, she told me IVF would be a safe option for me. I found another fertility clinic near me and was able to continue with a clearance letter from Dr. Awdish. I realized how lucky I was to have found a doctor who evaluated my case in its entirety and context. Fortunately, our surrogate had waited several months for us to be ready and I eagerly went to the second fertility clinic to begin the IVF treatments and harvest eggs.

The second week was the most difficult physically. My ovaries felt like they were the size of grapefruits, and I had a lot of bloating (I thought I looked six months pregnant). It almost felt like I had an unnatural tumor growing in my abdomen. I don’t remember any other significant side effects from the hormones, other than my husband telling me I was a lot moodier than usual. That makes sense given that my estrogen levels were almost 50 times higher than usual, so I get a pass on that one!

I went to the fertility clinic daily for ultrasounds to monitor the size of the egg follicles. Once they got to the right size, I needed another injection, this time submuscular (in the upper/outer quadrant of the butt) to start the ovulation process. My husband had to give me the shot because of the angle and force required to inject it. The shot had to be exactly 36 hours before the egg extraction procedure, which ended up at 2 a.m.

Egg extraction

Two days later I arrived at the hospital for the egg extraction. While this usually occurs at a fertility clinic, mine was in the operating room because I was high risk. First, I received an IV in a patient room. After listening to me complain extensively about how easy men have it, my husband went upstairs to do a sperm collection, which also was time sensitive.

In the OR, I was given medication to put me in a deep sedation, or “twilight state.” I don’t remember anything after that, only waking up and wondering whether I should ask the nurse if I said anything embarrassing while I was under the drugs. I decided I would rather not know.

I stayed in the recovery room for a few hours before going home. I was pretty sedentary the next few days, mostly because of soreness and discomfort. I started to feel normal again about two weeks later.

Statistics and success

Over the next five days, we learned how many eggs had fertilized and become embryos. We ended up with six embryos that had made it to the frozen

state. At first, I wasn’t very happy with that number considering how many eggs were retrieved, but I learned that was pretty good statistically. Sadly, some patients don’t get any embryos to freeze.

We chose to do genetic testing on our embryos, which turned our six embryos into only two “normal” embryos. In hindsight, I wouldn’t have done the genetic testing unless there was a specific gene to test for, or if I were over 35. I highly encourage anybody considering IVF to research genetic testing.

Embryo transfer

The next step was transferring the two embryos to our surrogate. Before the transfer procedure, she had to undergo hormone therapy, which can be administered by suppositories or injections. The transfer is done via catheter by taking the embryo and implanting it into the uterus. The actual procedure is pretty quick and painless, and no sedation is required. I went with our surrogate to the procedures for support. Seeing her go through it made me realize how truly blessed I was that somebody was willing to do this for me. It was so brave of her. I questioned whether I was worthy of such compassion. To know there are such people in the world made me realize I needed to raise the bar for myself.

Ultimately, it took two IVF cycles and three transfer procedures with our surrogate to achieve a pregnancy. There were a lot of highs and lows; it definitely was an emotional roller coaster. The first two transfers didn’t work and required a second IVF cycle. With the second IVF cycle, I only yielded one “transferable” embryo, which was a lot less than I expected.

To grow the eggs to the right size, one undergoes hormone injections in the belly tissue, typically over eight to 14 days. I’m not a fan of needles, so that was intimidating. Although it wasn’t very painful, the biggest challenge was overcoming the mental part of sticking myself.

We set our alarms about an hour prior to mentally prepare, which included re-watching instructional YouTube videos and reminding ourselves why we were doing this. I remember blasting music during the injection so I could take my mind off the fact that my husband was about to use my glute as a dart board for a 21-gauge needle. It ended up not being that bad!

A lot of the highs and lows were made even more emotional by not fully understanding the statistics and chance of success with IVF — it is a game of odds. There were times I doubted it would work, and we were going to keep spending money and taxing my body for nothing. Looking back, I realize that my husband and I were pretty lucky that we got a pregnancy as quickly as we did. That’s not always the case. Often, it can take more rounds of IVF and transfers before a pregnancy is achieved.

Needling concerns

There are so many things I wish I had known before starting this journey, and I hope PH patients considering IVF and surrogacy can learn from my experiences. I’ve listed some recommendations below:

• Discuss IVF as soon as possible with your PH doctor to understand if it is a viable option and how it might affect your health. Ask whether he/she has assisted a PH patient through surrogacy before.

• Harvest eggs as early as possible in your life. Go through the IVF process before you sign with an agency or match with a surrogate. Frozen embryos have a shelf life of almost 13 years. I wish I had started this earlier in my 20s, even though I wasn’t ready to have children. You can create as many embryos as possible while you are young and transfer them to a surrogate when you’re ready. After age 35, the fertility clinics view patients as “high risk” because of age and less favorable outcomes. The sooner you harvest eggs, the better your chances.

• Understand the statistics of IVF and the low chance of success of each treatment. It isn’t guaranteed to work on the first, second or even third attempt! This can be draining emotionally, physically and financially.

• IVF and surrogacy processes are expensive. Decide how much you can or want to invest in the process. It’s rare, but some insurance plans might cover parts of fertility treatments and surrogacy (mine did not). If you know you want to pursue this, start saving — early, early, early! Undergoing gestational surrogate with an agency and IVF can cost over $100,000. Knowing someone willing to be a surrogate can drop these fees considerably, but I recommend using a surrogacy attorney so there’s a contract to fall back on.

The most valuable lesson I learned is to drive your own health care. You know your body the best, better than any doctor or expert because you are physically living in it. Be fully engaged in your health care management plan. Understand your test results, lab results, etc. Ask questions and be proactive instead of waiting to be told what to do. I would encourage every patient (PH or not) to have the same mindset.

If I hadn’t advocated for myself throughout this process, it is likely that our daughter never would have been born.

I feel blessed that my husband and I were able to have our daughter. I didn’t fully understand the definition of a miracle until we had her because that is what she is. She makes all our “struggles” seem so insignificant because she is perfect in every way. We are so grateful for all the people who helped get her here and supported us on our journey. We are in complete awe of our surrogate who was willing to carry a child that wasn’t her own, the most selfless act I can think of. We hope we can teach our daughter the overwhelming amount of courage, compassion and strength it took to bring her into this world.

When Kellie and Paul Tasto walked down the aisle in 2007, they were already thinking about adoption. Three months before their wedding, Kellie learned that she had pulmonary hypertension (PH). She was critically ill with severe right heart failure, and she was devasted to learn that PH would affect their plans to start a family.