Welcoming a Baby After a Loss

On May 30th, Carter Bennett Collins made his grand debut and we could not be more in love. Carter quickly settled into our world. He has met so many of our friends and family, he is accustomed to our routines like evening walks around our neighborhood, and he thinks his fur brother Franco is just the goofiest. Every day we thank God for this blessing and promise to do our best as his parents.

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“Every good and perfect gift is from above.” James 1:17

But something is very different in our home. Even though he is the only child living under our roof, he isn’t our first baby. The firsts with Carter, were not our firsts as parents. When we left the hospital with only one baby in tow, and no other children at home to greet us, it would appear that we were clueless new parents who were about to be broken in by this bundle of joy. But we weren’t. We have been down this path before. The first time we gave him a bath, bottle, or watched him break out of his swaddle, were firsts with Carter, but not our firsts as parents. This isn’t the first baby to sit in our puppy swing, or the first to play in the nature activity gym. Carter isn’t the first baby to sit up in our frog chair. In fact, watching Carter sit in the frog chair for the first time, brought tears of joy, but also sadness because his brother Graham sat in that chair first.

Moments like this remind me, that Carter is loved in a very different home than most of the people we know. It is a home full of love, but also blended with happiness, sadness, excitement, and also grief. As I watch Carter in the frog chair, I imagine what it would have been if Graham were there. I imagine Graham helping Carter play with the butterfly toy, and watching the two of them laugh when Carter discovers the crinkle noise it makes. This is when I miss Graham the most. I wish Graham could kiss Carter, or I even wish for a moment where Graham becomes jealous of the attention a new baby takes from him. I wish Graham was here to make our life twice as messy, twice as crazy, twice as loud, and twice as happy. But he isn’t. And that is the reality of the world Carter is in. As a mom, I don’t want this hurt Carter. I do not want the differences in our home to make Carter feel any less loved, because that is not the case at all. But the reality is, with joy, there will always be a bit of sadness in our hearts.

Although this battle between happiness and loss is ever present in our home, one thing that is constant is our faith. When grief strikes, we are reminded to turn to God and ask for His help when we are struggling. When we look at Carter and our hearts feel as if they will explode, we thank God for this blessing He has given us. The scripture, “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise,” could not be truer in our home. Carter’s smile melts my heart every day and I know we have a healthy son because of our Heavenly Father. But there are days when my heart hurts and prayer is the healing medicine I need. When I notice the grief weighing on my heart, I also use it as an opportunity to talk to Carter about his brother. We still have many photos of Graham in our house, and we chose to keep many of Graham’s toys, clothes, even some of the artwork and décor from his room. At first it was tough to see Carter in “Graham’s stuff” or playing with “Graham’s toys” or even looking at a room that looked similar to Graham’s, but we realize these “things” are great avenues for Carter to get to know his brother. It’s a way for us to talk to him about Graham and for us to share how special he was to us. These moments where we can talk to Carter about Graham are more special than anyone can know. But as much as we love sharing our Graham memories with Carter, we love watching Carter become his own silly self, making his own stories for us to share.

That is the next adventure for our family and it is one that I am so excited to take on. God chose us to be Graham and Carter’s parents and I am forever grateful for that. I know this journey of motherhood will be complex, but with God’s help, I will do my best for both my boys.

Pregnancy After a Loss

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It’s been an exciting spring in the Collins’ household as we prepare for the arrival of baby Carter Collins. After our successful transfer, we tackled many items on our to-do list. From nursery preparation, to tying up loose ends at work, to enjoying quiet date nights before the baby arrives – we have been busy! Although it is quite satisfying to check things off our baby prep list, it’s also been an emotional time for our family as well. We’ve experienced everything from happiness to fear, which I think is common after the loss of a child. Not to mention, my pregnancy with Graham was anything but normal! I think many women who experience miscarriage, stillbirth, or an infant loss share similar feelings. The pregnancy is welcomed, but our grief and worries often overshadow the excitement. When Brandon & I struggle with fears, we often pray. Philippians 4: 6-7 reminds us, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” When worries creep in, I remind myself to stop, thank God for all that He has done, and pray for peace over my anxious heart. In those moments, I am reminded that Carter is a child of our Heavenly Father, and since he is in God’s hands, there is no need for me to worry. It’s not always easy given our past, but it does help knowing that Carter has the best brother and his Papa T looking out for him as well.

In the midst of our fears, we made sure to celebrate this sweet baby. We put together a pregnancy book, something I never did with Graham since he showed up so early. Brandon was able to capture countless bump pics to document our journey, we took a babymoon to New York, and our friends threw us the most thoughtful sprinkle. Baby Carter is loved by so many and for that, we are so thankful. I know many women who experience similar fears as us, let that dominate their experience, and if that is what they want to do, then that’s ok. But I wanted to make sure that this baby knows even when we were afraid, we were also so excited to meet him.

I have also struggled with the inevitable comparison of Carter to Graham. I am so excited for Carter to get here, but I do worry about comparing him to Graham, and vice versa. I know every parent probably shares a similar concern when expecting their second child, but in our case, I can’t help but feel it’s a little different. I want to make sure to balance how we honor our first born Graham, who we lost, without it affecting our second child Carter, who is alive, in a negative way. What I mean is, I don’t want Carter to feel like he can’t live up to this memory of Graham, and I don’t want Graham to feel left out or that Carter is a replacement by any means. I know these concerns might sound silly. As I type it out, I can’t help but think how absurd I sound, but I often find myself worrying about this. Carter will be able to do things Graham never did – he’ll run, talk, even hug and kiss us. And as he grows up, he’ll give us memories that Graham never can. But Carter will also be able to talk back, break rules, disappoint us even. He’ll behave like every other child and teenager, again something Graham never can. Even though they are both our children, the experience raising them will be vastly different. I pray that Graham and Carter know we appreciate their differences and love them both equally.

As you can see, these aren’t the typical fears and concerns most expecting moms face. But at the end of the day, all that matters is we are having a baby! Sometimes it’s hard to celebrate and shout out because of our past, but I remind myself, “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland” (Isaiah 43:18-19). This is God’s new plan for us and we must rejoice in it. And as for our fears for the future, I know everything will fall into place as God continues to lead the way.

Our Journey to Have an Alpers’ Free Baby

Brandon & I are excited to announce we are expecting an Alpers’ free baby in June! We are beyond excited, and of course grateful for this new addition. It’s been a tough road to get here, and we know that Graham was with us every step of the way. As I researched our options and the process available, I tried to find people in similar situations which at times seemed impossible. And even when I did connect with a few women through social media, we all agreed that we felt like most people didn’t understand this process or what it was like for us. I decided to write a post about our experience to hopefully help others who might feel alone in their journey, but also to educate others who are simply unfamiliar with genetic testing and infertility treatments. I must warn you, this is a long post, but I think it’s worth sharing.

The conversation for future children began immediately after the doctors diagnosed Graham with a rare genetic disease. A genetic counselor met with us that day to explain our options for future family planning which seemed rather premature since it was the last thought on our mind as we grasped the reality and severity of Graham’s condition. But what she shared with us did become an important part of our new normal as carriers of a rare disease.

To keep it simple, this is what the genetic counselor explained to us. Brandon & I are carriers of two different variants in the POLG gene that caused Graham’s condition. These mutations cause Alpers’ disease. We know the life expectancy ranges from 3 months to about 10 years, and in our case, Graham passed away 10 weeks after his first symptom, which led doctors to believe the variants we carry are probably more progressive than others. These mutations are recessive, which means the likelihood of a child inheriting these affected genes from us is 25%. Even though 25% may not seem that high of a number, when you think of the severity of the disease we carry, couples like us, who conceive naturally, face a terrible risk.

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But there is one process that can reduce the risk to less than 2% called IVF-PGD. Preimplantation genetic diagnosis (PGD) is a procedure used prior to implantation to help identify genetic defects within embryos created through in vitro fertilization (IVF). This prevents certain diseases or disorders from being passed on to the child. IVF-PGD begins with the normal process of IVF that includes egg retrieval and fertilization in a laboratory. PGD involves removing one or two cells from the embryo, then the cells are evaluated to see if there is a problematic gene present in the embryo. Once the PGD procedure has been performed, the embryos free of genetic problems can now be used for a transfer. The optimal accuracy of PGD for a single gene disorder is 98%, which is pretty incredible if you ask me. After doing much research, we decided this was the best fit for our family and began our IVF journey.

I’ll be honest – before this process I knew nothing about IVF except it helped women who could not have children have children. I thought it always worked, I knew it was expensive, but assumed insurance covered it, and had no clue what toll it took on your body. I quickly learned how naïve I was.

We met with our IVF doctor in February of 2017. It was an informal meeting to explain to us the process, to complete the remaining blood work for genetic testing, and discuss the financial cost, which is probably the most overwhelming component, but it is definitely worth every penny if it can spare us the pain we experienced in January. We were told we were ideal candidates for IVF since we conceived Graham naturally without an issues. We left the appointment confident and determined to make this work for us.

The next step involved creating a probe specifically for the genetic mutation Brandon & I carry. Since we were able to send off my DNA, Brandon’s DNA, and even Graham’s DNA, the genetics group was able to create the most accurate test possible. The probe was completed in April and now we could move forward with the IVF process. At this point I discovered IVF treatment or preventative genetic procedures like PGD are not covered by my insurance. I was shocked. After doing more research and investigating, this isn’t unusual. Unfortunately many employers and our lawmakers do not understand the necessity of tests like this for families like ours which is why there is limited coverage. Most families who decide to move forward with IVF for infertility or even genetic purposes have to pay for the treatment out of pocket. I truly believe this is unfair and hope over time this changes. I did my best to educate my employer on the necessity for coverage and was somewhat successful in changing our policy to now provide partial coverage for anyone who wishes to go through infertility treatment, which is amazing! But I did not get coverage for the genetic component. As grateful as I am that some IVF coverage was awarded, I hope as more people like myself share and educate the public about the importance of preventive genetic procedures this changes.

Once coverage went into effect, we were now cleared to begin. June was a whirlwind of appointments, regulating what I ate to help ensure the best egg quality possible, and waiting for my body show it was ready for treatment. After several days of shots, pills, and patches, we were ready for the retrieval on July 4. Our doctor only retrieved 11 mature eggs, which I am thankful for, but we knew the odds were not in our favor in this process, so we hoped for more. As I lay there trying to process the news and in pain from the surgery, I overheard the doctor reveal to another couple who just entered the recovery room that he was able to retrieved 18 eggs from her. I remember feeling jealous and I also remember feeling like a failure. My body failed to produce the number of eggs we hoped for and I didn’t know why. I know it was not a rational thought, but that is the reality of IVF. Women put so much pressure on their bodies to produce a certain result, and when it doesn’t happen, you feel like you failed. It’s awful. To make things even worse, the retrieval hurt. Some women are back on their feet working the next day, but that was not possible for me. It took several days before I felt comfortable just walking around my house, but eventually I started to feel like myself again.

As I my body began to heal, we waited on the results. On July 5, we received the first of many phone calls with results on how many fertilized, if the embryos were growing, etc. My heart broke when I received that first update. Only 4 of our 11 eggs fertilized! We were devastated. We hoped for at least 10 embryos to make it since it would give us the best chance at having at least a few healthy embryos. I had a goal in mind from all my research as to what the best scenario would be and we did not meet it – in fact, we weren’t even close to it. I was also upset by the cost for such disappointing results and I was angry. I was still angry at my body, now I was mad at Brandon’s, and I was frustrated at the situation we were in. It just seemed so unfair. After that phone call, I realized I had two choices – let the darkness in and throw myself a pity party or turn it over to the one who knows my suffering, knows my pain, but also knows the joy in store for us. After a good cry, I chose to pray. I chose to pick myself up and research what our options were and what to do next while waited on the results. We truly needed a miracle for those four embryos to make it Day 5, to survive the biopsy and freeze, and then test chromosomally normal and Alpers’ free. As I’m writing this, I am reminded once again at how many obstacles these little embryos had to face. And what did God do? He showed us His abilities. All four of those embryos made it Day 5 and were rock stars! They all passed the PGS test, which checks for possible chromosome abnormalities. Given my age and the fact this is a rather unnatural process, many embryos that mature are not necessarily chromosomally viable. It was a miracle that all four were healthy! And when it came to last hurdle, the PGD test, we found out of the 4, 3 embryos were viable and 1 was inconclusive. We have 3 possible children! I know that these results were only possible because of God. If you look at science, statistics, or even speak with our doctor, given our Day 1 results, it did not look likely we would have any healthy embryos – let alone 3. We took this as yet another reminder, no matter how far science and technology advance, God plays a HUGE role in making all things possible. Without Him, it is not.

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It is now August. It took that long for my body to heal and that long for the results, so now faced the final phase of the IVF process – transferring one of our embryos. Once again I had to prepare my body for the process, eliminate sugar and stress as much as possible and wait for the perfect window to transfer. There were many shots and pills to help with the process, and on September 15 we transferred one perfectly healthy embryo. Despite all the advances and gains in medicine, when it comes to the transfer process it sometimes works, and sometimes it just doesn’t. Our doctor told us upfront for a woman my age, I should expect a 70% chance of a successful transfer. Once again we found ourselves in a situation out of our control. This was in God’s hands – not ours. While waited to see if the embryo “stuck” we tried every old wives tale like eating Brazil nuts, drinking Pom juice, and my favorite – eating french fries from McDonald’s right after the transfer.

We also prayed a lot. A friend shared a set of prayers for the two week wait, which was incredibly helpful. Most of the prayers reminded me to hope in the Lord, that He is for me, and nothing is impossible with God. These reminders were much needed over the next 10 days. On the morning of September 25, I went in for the first blood test to see if I was pregnant. That afternoon my doctor called and shared that my numbers were perfect! I was pregnant! As we celebrated this milestone, we realized we weren’t out of the woods yet. Your numbers must double over the next two days, for the next week, to indicate that it is a viable pregnancy. So every two days, I went back to the office for more blood work, and waited for the results. After another week of tests, we moved forward with an ultrasound to confirm the pregnancy. And then after that, we waited to see heart rate and determine viability. We finally “graduated” from our IVF practice on October 19 successfully pregnant with an Alpers’ free baby!

I share this story not for sympathy, or even praise of our strength. Honestly, I share it so others understand what it might be like for their friends, family, even acquaintances who embark on the IVF or IVF-PGD journey. We are lucky, so incredibly lucky that this worked out for us, but to be honest, it doesn’t always end that way. I did not understand this until I was in the thick of it myself. So I hope our story can educate more people on how beautiful, yet truly tough this process can be. I also share this story so that others who are like us, realize they are not alone. For those families who carry a genetic disease, I hope you realize there is a possibility to have a child who is healthy and free of that disease. And although the road may be difficult, it will be worth it. Once again, my faith is stronger because of experience. My relationship with my husband is deeper than ever. And most importantly, we are expecting an Alpers’ free baby! God is so good!