The latest update on Baby Benson.

Here is the latest update on Baby Benson. As with two weeks ago, I am cutting and pasting an email that I just sent to family and friends, as I don’t have it in me to create a separate post. Thank you for your continued support, thoughts and prayers during this very difficult time.

Dear family and friends,

We cannot thank you all enough for the amazing and supportive cards, emails and phone calls that we have received since I shared our news about our baby’s diagnosis two weeks ago. We understand that next to us, this is hardest on our family and close friends and we so appreciate your kind words, thoughts and prayers. We realize that many of you “don’t know what to say.” We understand and want you to know that even the simplest messages and emails in which you express your care, concern, thoughts and prayers mean so much to us.

At our echocardiogram today our baby’s previous diagnosis of Left Atrial Isomerism (bi-lateral left-sidedness) was confirmed. It appears that our baby has a single right ventricle. Also it turns out that the heart block is 3rd degree or “complete.” Dr. Cuneo told us that it could have been 3rd degree heart block two weeks ago, though at the time she thought it was 2nd degree. Our baby’s atrial heart rate was 106 bpm and its ventricle heart rate was 54 bpm. Both were lower than they were two weeks ago, at which point they were 114-116 bpm and 56 bpm respectively. However, Dr. Cuneo did not think they were significantly lower. She was clear that she did not see signs of heart failure yet, in that our baby’s heart rate was not significantly lower than 55 bpm, its heart was not enlarged, nor did she see indications of fetal hydrops (abnormal accumulation of fluid within tissues of the body).

Dr. Cuneo was able to confer with her colleagues over the past two weeks, some of whom have had patients with babies who presented similar heart defects at this stage of pregnancy (I am 16 weeks 4 days today). Unfortunately, of the known cases like ours, on average the babies did not survive past 28 weeks gestation. In most of those cases the pregnant mothers had been taking terbutiline (a medication that speeds up the baby’s heart rate and the mother’s) for some time before it died. The statistics that Dr. Cuneo gave us last time were based on babies who presented these heart defects significantly later in gestation and after talking with her colleagues she explained that they unfortunately no longer apply to us/our baby. She told us that she doesn’t have a crystal ball and that since our situation is so rare, she can’t give us any odds, but that it doesn’t look good.

We will return for another echocardiogram in two weeks. Dr. Cuneo felt confident that our baby would still be alive at that time. However, she also indicated that there is a good chance at that time its heart may have begun to fail or could be close to it. If that is the case, we will then have to decide whether to take a passive (do nothing) or aggressive (I would start taking terbutiline) approach going forward. Bob and I have discussed this at length and we will continue to. We see many reasons to strongly consider both options and trust that when the time comes, we will consult with our doctors (including Dr. Cuneo and our regular OB) and then we will make the decision that makes the most sense to us and that we feel is best for our baby and our family.

This has been an extremely difficult day for Bob and me. In many ways today’s news has hit us harder than learning the diagnosis and potential prognosis two weeks ago, as at that time our baby’s chances for survival seemed considerably higher, though we understood even then the odds were not favorable. We feel very sad to know that whenever our baby is born, it is highly unlikely that it will be alive, as it will probably die in utero. Dr. Cuneo, being a very positive and optimistic person, encouraged me to try to be positive and connect with our baby, as she believes that our baby can sense my attitude towards it and in some small way it could impact its survival, at least in the short term. I took that to heart and intend to do my best to show our baby how much we love and care about it in the days and weeks to come.

One other thing we want to share with you is that we had the opportunity today to find out our baby’s gender. We are proud and happy to let you know that we are having a girl! Though we don’t know what the future holds for our daughter, we feel blessed and grateful to have her in our life for however long she is able to be with us. We did tell Sean tonight and he was excited to find out he has a baby sister. We continue to talk with Sean about our baby, when we wants to, and remind him often that she is sick and may not be like healthy babies.

Thank you again for everything. We know that your hearts are breaking along with ours, as we grasp what may happen with our little girl. We appreciate your continued thoughts and prayers. As we have said before, we trust in God, we have a strong faith, we know that we will get through this, especially with all of your love and support, and we intend to do our best to find some good in all of this. Take care and may God bless you and your loved ones.

I will send another update after our next echocardiogram, Wednesday, January 30, if not before.

Love, Kathy