This was the fifth time Yadi Martin was pregnant. The first four pregnancies ended in miscarriages. But this time it was different. The fetus had a heartbeat.
As Yadi and Jamal Martin told TODAY, this was their miracle baby. That was until a routine anatomy scan alerted the Martin’s doctor that their baby has a rare disease called congenital high airway obstruction syndrome (CHAOS). He told them that their baby will not survive unless he has surgery while still in the womb. CHAOS is an acronym for congenital high airway obstruction syndrome. Nothing that Jamal and Yadi Martin had experienced prior to this announcement could compare to the difficulties and obstacles they would face in the future.
In addition to their concern about the baby, Yadi developed hyperemesis gravidarum which caused vomiting during her first two trimesters requiring a pump to administer medication in an effort to relieve her symptoms. Yet overall Yadi and Jamal continued their hope for the survival of their baby.
Their doctor explained that the baby had an obstructed airway. The exact location of the obstruction at that point was unknown as was the cause of the obstruction.
Yadi Martin age 39 and her husband Jamal age 43 met with maternal-fetal medical doctors and various pediatric surgeons to better understand CHAOS.
Doctors have been aware of CHAOS since the early 1900s. Yet very little is known about the disease except that it must be diagnosed prior to birth or it can be fatal.
The chief of pediatric otolaryngology, Scott M. Rickert M.D. at NYU Langone, explained that if the obstruction is a cyst, it is usually in the most narrow part of the airway near the vocal cords.
Ashley Roman, director of the maternal-fetal medical division at NYU Langone Health, added that CHAOS becomes critical as soon as the baby is born as the infant needs oxygen to take its first breath.
Dr. Roman was able to confirm the baby’s diagnosis as she had witnessed CHAOS during her earlier medical training. Dr. Roman told TODAY that seeing CHAOS leaves an indelible impression on the observer because it is so severe. She began consultation with her colleagues about delivering the baby and how to facilitate his breathing. The plan was to keep the infant on placental bypass until they could establish an airway.
When the Martins met with their surgery team (twenty-five medical professionals were on hand for the delivery), they felt somewhat more comfortable. Jamal thought that even under difficult circumstances, the team seemed to know what they were doing.
The Delivery and More of the Unexpected
Dr. Roman delivered baby Aydin’s head, neck, and shoulders. Aydin was still attached to the placenta so that he could breathe. Dr. Rickert created an airway after he evaluated the baby and examined the blockage. Dr. Rickert then proceeded with the tracheotomy and bypassed the obstruction in the airway.
The surgeons took every precaution. Yet as Jamal said, everything that could go wrong did go wrong. The next unforeseeable event occurred during the tracheotomy and efforts to bypass the obstruction in the baby’s airway. Aydin was able to breathe, and Dr. Roman completed the delivery using the EXIT system or ex-utero intrapartum treatment.
Then Aydin’s heart stopped beating.
The doctors immediately went to work resuscitating Aydin. The baby was then put on an ECMO machine for several hours. ECMO is a heart and lung bypass machine.
Dr. Rickert explained that when there is an obstruction in the airway, the lungs expand. In Aydin’s situation, the lungs appeared to be pressing on the heart. Getting Aydin attached to the ECMO caused other complications. His belly began to expand as a result of swollen intestines. Compressing his chest created bleeding in the area surrounding his liver. Finally, Aydin was successfully attached to the ECMO machine.
Internal Bleeding
The doctors relieved the pressure and remove some of the air surrounding the lung by opening Aydin’s belly. He was losing fluid from his bloodstream. The doctors had to give Aydin continuous fluids to assist in the running of the ECMO machine and support his heart. During that time his doctors worked continuously to stabilize him.
Now the question was, how and when do they take Aydin off the ECMO machine? The doctors knew they could not keep pumping fluids into Aydin as his kidneys would shut down. They waited and when they saw a window where Aydin was stable they immediately took him off ECMO.
Not being able to find any information about the disease, answers to their questions, or even locate support groups gave the Martins a feeling of isolation. They decided to speak with TODAY to bring awareness of CHAOS.to other parents.
Aydin’s mother Yadi recalls that Aydin was able at that point to oxygenate and also get off carbon dioxide. Even though the doctors announced that Aydin was still in critical condition and they did not know what his chances were to survive, Yadi said that at about that time she believed he would survive. And he did.
More Operations
Yes, Aydin survived but more operations had to be scheduled. He was born with a congenital heart defect and also needed an operation to open an area in the rectum. Aydin was given a G tube for feeding and was moved to a rehabilitation center in January 2022 on Yadi’s birthday.
Aydin returned home for his own birthday but was back in the hospital within weeks due to a trachea infection. Due to the abnormal structure of his vocal cords, Aydin is unable to speak. He will be taught sign so that he will be able to communicate.
He will require an operation when he is older to reconstruct his airways. In the near future, he will undergo another operation to repair an undescended testicle.
Aydin must have inherited his parents’ sunny disposition as they report him to be funny and strong-willed and generally in good spirits.
Aydin is able to sit unaided for about three minutes. Yadi says that when these operations are over Aydin will be absolutely perfect.
