We receive many questions from parents who have lost a baby to ACD and so below we have tried to answer some of the most common questions we receive. It is impossible for us to know about all the cases of ACD in the world, and we are not medical professionals, therefore the following answers are based on what we as parents know about ACD.
What causes ACD?
The cause of ACD has not yet been determined. It was first identified in 1947, and we are aware of 116 cases of ACD worldwide (as of June 2003).
What are the chances of me having another baby with ACD?
Because so little research has been done on finding the cause and cure for ACD, there is not any scientific evidence to support an answer to this question. We know of eight familial cases of ACD and this may indicate a hereditary basis of ACD but this has not been scientifically proven. If it is proven to be hereditary (autosomal recessive), there would be a 1 in 4 (or 25%) chance of having a baby with ACD and a 75% chance of having a healthy child.
Do you know anyone who has gone on to have a healthy child?
Yes, the vast majority of families that we know have had subsequent pregnancies have had a healthy baby. Of the 47 families in the ACDA, 31 have had healthy children since losing a baby to ACD (as of June 2003).
Is there anything that can be done during a subsequent pregnancy to detect ACD?
Unfortunately, ACD cannot currently be detected in utero at this time. Sonograms can detect anomalies associated with ACD (i.e. gastrointestinal defects), but evidence of an associated malformation does not confirm the existence of ACD.
What measures should be taken upon birth of a subsequent baby?
Some families notify the doctors and nurses at the hospital about their previous loss and the potential for problems. Several families have had their baby placed in a Neonatal Intensive Care Unit to be monitored and some have an oxygen saturation monitor placed on the baby while at the hospital.
What is the longest a baby has survived with ACD?
We know of one baby who lived until he was almost nine months old. He presented with problems, though, at two weeks of age, and continued to have problems throughout his life. It is possible to have misalignment of pulmonary veins and also "patchy" cases of ACD, which can affect the severity of the case.
Is there research being done on ACD?
Yes. A team of doctors and scientists at the Baylor College of Medicine in Houston are in the third year of a multi-year study to determine whether the cause of ACD is genetic. They are locating new families through the ACDA, GeneTest ®, neonatologists, pathologists, geneticists and genetic counselors. They are collecting clinical data and DNA samples and genotyping using repeated DNA sequence markers present throughout the genome.
How can I participate in the ACD study at Baylor?
Contact Dr. Bassem Bejjani at Office Phone: (509) 368-6717, Fax: (509) 358-7627, or E-Mail: email@example.com for more information. All that is usually required is some information on your family and a blood sample from each family member. Dr. Bejjani is the lead doctor for the study and can explain in more detail what is required. The more families that participate the better the chances are of finding a cause and cure for ACD.
Do you know if they are close to finding the gene that causes ACD?
This question assumes that the cause of ACD has its basis in heredity. Since heredity is not proven, it is premature to answer this question. However, Partha Sen, Ph.D., one of the doctors on the Baylor team, recently informed us that it could be 2008 before his study reaches any conclusions.
How can I get a copy of the articles listed in this website?
The fastest way to get a copy is to go to your local medical library and look up the articles in the medical journals. If you do not have access to a medical library, then you can get a copy from the ACDA - send your request to Steve and Donna Hanson at firstname.lastname@example.org.