Tuesday, July 15, 2014

I Couldn't Love You More - by Jason Ingam and Matt Hammitt

Went by the bookstore today and found this:
I Couldn't Love You More  -     By: Matt Hammitt, Jason Ingram
A book by Jason Ingram and Matt Hammitt based on the song from Matt Hammitt's Every Falling Tear CD. Katie listened to this song almost every day of her life. A portion of the proceeds go to the Whole Hearts Foundation to help children born with heart defects. What a great way to share Jesus with Ian and honor the memory of his big sis at the same time!

Tuesday, March 11, 2014

For Heart Mommies and Daddies

This post is for any heart parents who are trying or someday plan on trying for another child. It is a post that we have struggled with but in good conscience cannot remain silent on. This is the story of how we believe (through the Grace of God) we were finally able to have a healthy child.

When Katie was first diagnosed, we were told by the doctors that the cause of HLHS was unknown. That there was nothing we could have done to cause or prevent her heart defect. My OB said it was, "a random fluke and probably won't happen again." When I asked if there were any tests we could run on me or if we could check to see if I was deficient in any vitamins before getting pregnant again, he said it was unnecessary.

"How old are you?" Was one of the comments we received when first announcing our second pregnancy. As though my age was to blame for what had happened. That really, truly hurt and is one reason that I am even still reluctant to post. It's not easy to think about your age or your body being responsible for your child's death but its even worse to find out that other people are thinking it. A week and a half later, I would miscarry, making my self-doubt all the greater.

I was worried that the statement might be true. That in my early 30s I might already be too old to successfully have children. It was devastating.  I wanted desperately for there to be something I could DO to prevent this from happening again.

We requested that testing be done on Lily after she passed to see if there was anything wrong. The results showed another seemingly unrelated "random fluke" that according to my doctor once more, "probably wouldn't happen again."

At that point we no longer believed our doctors. This was one too many random flukes to be plausible. The bible tells us to ask, seek, and knock. Up to this point we had only been asking. We prayed daily for God to provide us with healthy children or for Him to take the desire for children from us so that it would not be as painful.

The point at which we lost faith in our doctors was the point that we began to seek. We started doing our own research and God led us to read about a gene called MTHFR, which is responsible for breaking down and processing b vitamins in the body, including folic acid. Folic acid is a synthetic form of folate, which is incredibly important in cell reproduction and proper development in babies. It is the vitamin that doctors tell pregnant women to supplement above all else. It is the vitamin that the US government requires all wheat products to be supplemented with in order to reduce birth defects across the nation. It is also the vitamin that, due to its synthetic nature, people with certain MTHFR gene variations have trouble breaking down and processing.

Folate deficiencies can cause defects of the heart, brain, and spinal column. It could explain both of our losses. So far we had asked God for children in prayer. We sought out the information we believe He wanted us to have. At this point it was time to knock, to take action based on what we had found out. I went to my OB with the information and asked to be tested. He refused, saying he didn't believe it had anything to do with our losses. We went to a different doctor who agreed to the test.

The results showed that I am heterozygeous for an a1298c MTHFR gene defect, which slightly reduces my ability to process synthetic folic acid. This is one of several MTHFR defects possible and it is the one that is considered not so bad. The one that many doctors still claim have no affect on one's ability to have healthy children. Thankfully, we didn't need a doctor to believe us in order to treat it. The main treatment is to switch from synthetic folic acid (which requires several steps for the body to break down) to methylfolate, an already broken down form of folate. There were other things I could do to help as well. I switched to a prenatal that is easier for me to absorb. I took additional methylfolate and other b vitamins in thier easy to absorb forms. I changed my diet in order to avoid synthetic folic acid (which can actually block absorption of methylfolate. I cut  a lot of stress out of my life. We took all of the steps we could think of to better our chances of a healthy child.

After having taken the new vitamins for a few months to allow them to get into my system, we began trying again.  We didn't stop researching though. I went to see another doctor who suggested that I also get tested for hypothyroidism, which if left untreated can also cause birth defects. So far that month, pregnancy tests had been turning up negative so we decided to hold off a month to see what the hypothyroidism test said. Lo and behold a few days later on a Saturday I ended up taking another pregnancy test and this time it was positive! My hypothyroid test results came back that Monday so needless to say I called the doctor immediately to be put on medicine for hypothyroidism as well.

We believe that it was a combination of the MTHFR and hypothyroidism that prevented us from having healthy children. It was nothing we did. It was not my age. This is the way God created me and he created Katie and Lily according to His design also. But he did give us something that we could do to prevent it from happening again. We have felt led to share this information now that Ian is here safe and sound and healthy in the hope that someone else will be able to put it to good use as well. We are not saying that this is THE cause of HLHS but that it could be A cause and that there is a very simple fix if that is the case.


Below is the research I found when trying to determine if MTHFR was what might be causing our babies birth defects. Feel free to use this compilation to present evidence to your doctor if he/she is ignorant of MTHFR and PLEASE feel free to add links to your own research as well in the comments if you know of an article or study that may be of interest to any heart mommas and papas.

Also, the vitamin regimen I was on is as follows. Make sure you check with your doctor or nutritionist when pregnant and changing your supplements.
  • Thornes Basic Prenatal (contains methylfolate and other bioavailable vitamins that are easier to absorb)
  • Extra methylfolate (B9) instead of folic acid and methylcobalamin (B12)
  • Daily DHA supplement
  • Calcium supplement
  • Probiotic
  • Flax Seed
  • Change of diet including eliminating wheat and reducing my intake of dairy and sugar.
Research Abstracts/Studies:


Friday, March 7, 2014

Catching up

Wow, its hard to believe that it has been over a year since we last posted. So much has happened in the past year, both good and bad. Two years ago today, our daughter Katie had successfully made it through her first surgery and was waiting for the swelling in her chest to go down enough to be able to close her back up. It is incredibly hard to see any child like that but even more so when the child is your own.

One of the things that helped us find comfort in those days were the blogs of other heart mommies and daddies and their stories of how their little ones were thriving.  It made it easier to believe that the same would happen for Katie. It was one of the reasons why we starting blogging, in the hopes that other couples in the same situation could find comfort and hope.

When she passed away, I went looking for a different kind of blog. Blogs of the parents who were not quite so fortunate. I was searching for a glimmer of hope. A way to survive what happened. A light at the end of the tunnel. What I found was the blog of a couple whose daughter had also passed away from a very severe heart defect. They had gone on to have a wonderfully healthy baby and were able to find peace and healing. This gave me hope that we could do the same and this is the reason why I am writing again.

But it would be a long struggle for us. Those who haven't been there will never understand how stressful it is to try to get pregnant again after a loss. To carry a baby after a loss. Add onto that some major family drama and the level of stress and fear that we were under was unbearable. I was having panic attacks pretty regularly during this time. It was difficult to even think of telling people when we finally managed to get pregnant again. We waited until I was about 11 weeks along with Lily before starting to announce the pregnancy and due to fear of another loss and a hurtful comment during that stressful announcement, we didn't really spread the word much after that. Many people didn't realize we were were pregnant until I miscarried at 12 weeks 5 days and some not until I posted on Katie's birthday last year.

I will always regret how I let fear and stress suck all of the joy out of my pregnancy with Lily. That was the only time I will ever have with her and I will never get it back. I allowed the fear of losing my baby and the stress to steal the joy of new life. It took me a few months to process this but afterwards, I vowed that if God ever blessed us with another child that I would do my best to enjoy and appreciate each day that I woke up still pregnant, because that might be all we get. We prayed that God would either bless us with healthy living children someday or to help us find contentment and peace without.

When we were ready to start trying again, we found out that some well loved members of our church family were also on a similar journey to expand their families and I cannot begin to describe what a wonderful blessing it was to share this journey with them. We were able to pray for each other and provide a much needed support system for each other during a difficult, yet hopeful, time in all of our lives. I will not share names to protect their privacy but you guys know who you are and we love you!

After a lot of research, I changed my diet and my vitamins and cut out as much stress as I possibly could. Not very many people knew when we became pregnant with our third child. Only if you've lost a child can you understand the excitement and desire to share mixed with the fear that if you do tell, that you will end up having to call those same people back a few weeks later to share another loss. Each day I repeated the mantra, "Today I am pregnant!" Each day we did our best to pray about our many fears instead of worrying about them and to appreciate each day with our baby as though it might be the last.

We had some scares early on. The first time the midwife went to listen to the heart beat, she couldn't find it with the doppler. After an agonizing 10 minutes or so, ultrasound showed a tiny peanut with a steady heartbeat. I sobbed with joy that our baby was still alive.  The first three or four times the midwife tried to use the doppler the same thing happened. I think I cried at every appointment until well after I could feel the baby moving regularly.

We had another scare on Mother's Day of last year. We went for a walk and I had a small bit of bleeding. I thought for sure I was going to miscarry at that point because it was around the same point that I miscarried Lily. But praise the Lord! Ultrasound showed a thriving baby and that the bleeding was probably due to a marginal placenta previa which corrected itself as time went on.

As the weeks rolled by I began to feel little flutters. You know, the ones that stop before you are sure if it is really baby or gas. These developed into reassuring kicks and punches, which assured me on a daily basis that our baby was still alive.

The next big milestone was our 20 week ultrasound where they would look at the development of the baby's anatomy. I was so nervous that morning that I ended up puking in the sink even though morning sickness was long past. When we got to the appointment, it was all we could do to hold each other's hand reassuringly as the ultrasound tech did her job. She carefully examined each structure and we waited and prayed with baited breath as she described each healthy limb and organ. Only after she looked at the heart and reassured us that all four chambers were there did we exhale and break down in tears of joy and relief, praising God for his great mercy and compassion.

Later, a fetal echo and a final ultrasound to more closely examine the heart, brain, and spinal cord would further reassure us. Our baby boy was healthy.

The prayers and pleas did not stop there though. One thing that very rare conditions make you aware of is that the rare catastrophies do happen and they do happen to somebody and that somebody can very well be you. Even healthy babies can get sick. A million and one "could happens" were and will always be on our minds. But from what I understand - this is parenthood. Even parents who have not lost a child worry about the health and happiness of their kids. What a blessing to have a child to worry and pray over!

The day our son was born was the most wonderful blessing. The moment they placed him on my chest and I realized that they were not going to whisk him away from us was amazing. We thank God for hearing us in our time of pain and for giving us the desire of our hearts - a healthy, living child.

This is getting extremely long so I will wrap it up here, but we wanted to finally share our good news and most of all, hopefully provide encouragement to couples who are facing the same struggles that we have. To let them know that the road to healing is a long one with many bumps along the way. It is a road we are still traveling on and will be until the day we are reunited with all of our children in heaven. But it is also a road with many blessings. With happiness and joy. And somehow each bump seems smaller than it once would have and each blessing is more appreciated.