My husband and I found out I was pregnant with our third child in June of 2013! We are thrilled to be bringing another sweet baby into this world. At our 17 week appointment, we found out we were going to have another boy, for a total of three boys! At 23 weeks, the first week of November, I went in for my anatomical ultrasound. After having two different sonographers try and capture certain images of the heart, and then finally the radiologist coming in to view the images himself, I knew something wasn't right. All I was told was that there were abnormalities of the heart and that I could not deliver the baby there in Fairbanks.
My midwife called me later that day and he told me it was a very serious condition called Transposition of the Great Arteries (TGA), where the two major arteries of the heart are switched. However, we would not know more details about his diagnosis until we met with both a Periantologist (a high risk pregnancy doctor) and a Pediatric Cardiologist (a children's heart doctor). Neither of these doctors are in the Fairbanks area, so we traveled to Anchorage for the appointments. We knew we would be in the area around Thanksgiving because we have family there, so we scheduled the appointments around that time. In the meantime, we did everything we could to research our child's condition and anxiously waited through the month to meet with the specialists. Through our research, we found out that the baby can not be born in Alaska, as the surgery requires specialized heart surgeons and a specialized Cardiac Newborn Intensive Care Unit (NICU). We also discovered that my close friend worked at an amazing children's hospital in Salt Lake City (Salt Lake Primary Children's Hospital) that treated our baby's heart condition. We knew that was where we were supposed to be and that we would also have family, friends, transportation, and so many other resources available to us there.
Our appointments came and part of the diagnosis was confirmed. However, we also found out it was more than just TGA. Our Pediatric Cardiologist told us that it was a rare 3 part heart defect called Taussing-Bing Anomaly (named after two doctors). The three parts include a Transposition of the Great Arteries (TGA), a Double Outlet Right Ventricle (DORV), and a Sub-pulmonary Ventricle Septal Defect (VSD), which means the major arteries are switched and coming out of the wrong side of the heart, along with a hole between the lower chambers of the heart. Our research started all over again. There are only about 20-60 cases of Taussing-Bing in the United States each year. As with most heart defects, oxygen is not properly supplied to the baby and therefore, the baby will suffocate. This is one of many heart conditions that cause a “blue baby” when born and also causes death if not treated immediately.
The baby will require a temporary procedure right after birth and then open heart surgery within the first week of life. Although this anomaly was discovered in 1949, a fairly promising surgery of the repair of the anomaly was not successfully achieved until the mid-90's. However, management of the Taussig-Bing anomaly remains challenging. Because the heart is the control center for so many functions of the body, it can create or cause further complications throughout life, as well as multiple heart surgeries. Although we recognize this to be the case, my husband and I have learned to always hope for the best and be grateful for the moments we have in our lives with one another.
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| Normal Heart vs. Taussing-Bing Heart http://www.rch.org.au/cardiology/heart_defects/Double_Outlet_Right_Ventricle/ |
Heavenly Father,
ReplyDeleteWho has filled this world with beauty, eyes opened, to behold thy gracious hand in all thy works. I humbly beseech thee, Oh Lord, the Creator and Preserver, Who You have guided and led them into the way of truth, faith and Spirit, the righteousness of life.
With Fatherly goodness, to your children, afflicted and distressed in mind and body, I beseech and beg you to comfort the family of Sam and Evelyn, my family, to relieve them of any sufferings.
Lord you made us in your own image, look with compassion and love, that now what is all our struggle as we pray in unity. Lord who cometh from every good and perfect gift, send down the healthful Spirit, that they may have upon them Your continual blessing.
Merciful Father, You have blessed us with the joy and care of children, You have taught us that you do not willingly, afflict or grieve the children of men. We entrust all who are dear to us Thy never-failing care and love.
While I Lord am meek, am guided, to beg that in these, our prayers, to assist, that light rise in the darkness for the godly. That of this mortal life, may ever be defended, by Thy gracious and ever ready help.
By the might of Thy Spirit, lift us, we pray thee to thy presence, where we will still, and know that Thou art God. With Thy most gracious favor, continual help and guidance that we may Glorify your name.
Almighty God, who has promised to hear the petitions of those who ask in the Son's Name, I again beg for thee to incline thine ear to us, who have now and continue to pray, for Sam, and Evelyn, our family. Which we have faithfully asked, according to thy will, be done, and to the setting forth of thy Glory; through Jesus Christ Our Lord. AMEN